Remicade Lawsuits

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Published: August 29th, 2008

The arthritis drug Remicade has been linked to a number of serious and potentially life threatening injuries. In September 2008, stronger warnings were added about an increased risk of invasive fungal infections.

STATUS OF REMICADE LAWSUITS: Lawyers are evaluating research surrounding the potential safety concerns involving cancer and Remicade, as well as potential cases for individuals who developed fungal infections.

MANUFACTURER: Centocor and Johnson & Johnson

OVERVIEW: Remicade (infliximab) is an autoimmune disorder drug known as a Tumor Necrosis Factor (TNF) Blocker. It is approved by the FDA for treatment of psoriasis, Crohn’s disease, ankylosing spondylitis, psoriatic arthritis, rheumatoid arthritis and ulcerative colitis.

It was the first TNF antagonist available in the United States, and has been used by more patients world-wide than the other medications in the same class, Enbrel and Humira, combined. It is a blockbuster drug for the pharmaceutical giant, Johnson & Johnson.

REMICADE CANCER SIDE EFFECTS: In 2004, a warning letter was sent to healthcare professionals indicating that Remicade had been associated with more cases of lymphoma among patients receiving the drug. A study published in the May 17, 2006 issue of the Journal of the American Medical Association (JAMA) found that Remicade side effects could triple the risk of developing cancer.

In June 2008, the FDA released an early communication about an ongoing safety review involving Remicade and a possible association with the development of lymphoma and other cancers among children and young adults and a Remicade black box cancer warning was added in August 2009.

At least 30 reports of childhood cancer were received by the FDA involving the use of TNF blockers. Other medications indicated in this early communication were Humira and Enbrel.

According to Johnson & Johnson, among children taking Remicade, most of the reports of juvenile cancer involved those treated for the bowel disorder Crohn’s disease. Approximately half of the cancers seen in all children and young adults taking TNF blockers were lymphomas, including both Hodgkin’s and non-Hodgkin’s lymphoma, which is a cancer of cells in the immune system. Lymphoma is not a recognized complication of JIA (Juvenile Idiopathic Arthritis) or of Crohn’s disease. Other cancers reported included leukemia, melanoma and solid organ cancers.

REMICADE FUNGAL INFECTIONS: A number of users who were receiving TNF blockers, such as Remicade, have experienced fungal infections, such as histoplasmosis, blastomycosis and cocciioidmycosis. In several of these cases the infection resulted in death.

In September 2008, the FDA issued an alert to healthcare providers to provide new information about the risk of Remicade fungal infections. At that time the agency also indicated that new information will be added to the Remicade black box warning to ensure that doctors and consumers are aware of the risk, especially for those who live in or visit areas where fungus is prevalent.

Unfortunately, many cases of fungal infections from Remicade go undiagnosed by doctors, since the symptoms are similar to the flu. Symptoms could include cough, fever, fatigue, loss of weight, sweating and shortness of breath.

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There Are 162 Comments So Far • (Add Your Comments)

  1. [...] conditions among children. The agency is investigating reports of children and young adults using Remicade, Enbrel and Humira who developed lymphoma and other [...]

  2. [...] FDA involving the use of TNF blockers. Other medications indicated in this early communication were Remicade and [...]

  3. [...] ENBREL CANCER SIDE EFFECTS: In June 2008, the FDA released an early communication about an ongoing safety review involving Enbrel and a possible association with the development of lymphoma and other cancers among children and young adults. At least 30 reports of childhood cancer were received by the FDA involving the use of TNF blockers. Other medications indicated in this early communication were Humira and Remicade. [...]

  4. [...] the risk of a serious fungal infection which may develop in users of rheumatoid arthritis drugs Remicade, Humira, Enbrel and Cimzia. The agency indicates that new information will be added to the [...]

  5. my husband took remicade for a little over two years. in may 2007he went into dehydration, all vital organs went out of normal limits. he got a severe lung infection and was on 5 differant antibiotics. they never found a cause. His white count stayed over l6 and went up to 35 in december and was again hospitalized for a severe infection in a hip (artificial). again a bug could not be cultured. i believe remicade caused this problem. he has been in eight medical ficilties in a year and a half. we stopped remicade in may of 2007 and will not go back. beware.

  6. [...] research suggests that Enbrel, Remicade, Humira and other biologic TNF-blockers widely used to treat rheumatoid arthritis do not appear to [...]

  7. I had remicade infusions for over a year and developed a nodule in my left lung. The pet scan came back positive and I was rushed into surgery to remove the nodule, the pathlogoly report indicated blastomycosis and I remained in the hospital for a couple of days. I had a lung scan done before i started the remicade due to my doctor wanting to rule out phumonia. Scary stuff indeed- it does help the crohns despite the risks….godbless.

  8. My husband was on Remicade in 2005 & 2006 8 months total. He has severe neurological issues which has caused perminent nerve damange of the milar sheething on his nerves and gastro parisis of which he now needs a gastric pacemaker.

  9. My mother had remicade treatments for arthritis. In Dec.2008 she was hospitalized. My mother was diagnosed with Nocardia a fungal disease of the lungs. My mother slowly wasted away, ended up on a ventalator and passed away on April 5,2009 without ever leaving the hospital or ICU. Her doctors stated that they are seeing more unusual cases like my mothers due to Remicade. It was a horrible was to die and no one should have to go through that. So, if you are taking other meds. for arthritis and Remicade I suggest you ask your Doctor if it is safe. But because my mother was 81 no lawyer will even discuss a lawsuit against the maker of Remicade.

  10. Jill, my mother went thru the same thing. A fungal infection that could never be cured. She went into the hospital In January 08 and passed March 26, 2008. I warn eveyone. This was a horrible way to have to watch your Mother die, wasting away and hurting. Johnson and Johnson contacted us for information. I denied their request.

  11. Develpoed leukocytoclasic vasculiis from remicade in legs and gasroinestinal ract

  12. My mother (aged 45) was recently on remicade infusions for Ankylosing Spondylitis, a form of Rheumatoid Arthritis. After approximately six months after beginning treatment, she was hospitalised and ended up with severe liver failure, resulting in a very lucky transplant. Without the transplant, she would have died an hour later. She was in hospital for over two months, and is still recovering. The liver failure was extremely acute – her liver completely shut down in two weeks, and other organs began to follow. Doing research, I have found many other similar cases, though not all were so lucky. The entire experience has profoundly affected my Mother, and the rest of the family, and will continue to do so for some time. Luckily, Australia has a public health system, otherwise we would be out of pocket at least $50,000. Be careful on this drug, and make sure you have a competent doctor and all the information.

  13. My mother has suffered quite a few nasty medical problems which seem to be all linked back to Remicade treatment she had for arthirits.
    My family has been thru so much with her however she still is in remission from the lung cancer (Tumor) she had on her right lung which they removed 1/3 of her lung. That was the second cancer in one year,
    I’ve been researching Remicade ever since. I don’t want another family to have to go thru what she has gone thru. Does anyone out there know of a class action that was filed or an attorney that represent all these comments that can help all the people that are suffering or have lost a loved one.

  14. I was put on remicaide for chron’s desease.I took infusions for over two years.I kept a upper respertory infection alot.The last four months or so my bones and joints would give me severe pain two weeks before a treatment,I also got nodules on my elbows and possibly my lung.I have stopped remicaide,but now we are trying to treat the arthritis which is more of a problem than the chron’s was.I tried methotrexate and humira briefly,another bad infection in my lungs,so for now no more of those kinds of drugs.I will say in the beginning Remicaide was like a miracle for me,but I deal with the after-effects also.I would urge people with copd not to use these types of drugs,we are already at risk for infection anyway.

  15. I started using Remicade April of 2008 for Crohn’s disease, and stopped Oct 2008. From the first infusion, I started getting severe joint pain. It started in my lower legs and feet. With each infusion the pain got worse and would move up my body. It got to the point I couldn’t stand or sit, lift my arms, or turn my head in any direction. I had numbness on the left side of my body, with horrible headaches and stuttering. I went to a Reumy, and he said I had SLE and Stevens-Johnson Syndrome both caused by Remicade.
    I am left with joint pain, tendonitis in my left wrist, dislocated jaw, four protruding disc in my neck, tumor on my left shoulder, my head gets stuck if I turn my head to far to the left, and miscolored pigmentation on my left arm. I would honestly have to say that the pain I experienced with remicade was worse then the original pain of crohns. Wasn’t worth it!

  16. I am looking to talk to a parent that has/had a child on Remicade for Crohns. My daughter is 7. She is not responing to 6-mp and Pentasa the way the doctor would like. I am scared to death.

  17. There is a friend of my daughters who is 17 and has been on remicade for about 1 year. She says it is a miracle drug. She is trying to inform people about her journey. See the article listed at this site. It gives her email address.

    http://www.komw.net/artman/publish/article_5006.shtml

  18. I’m 44 years old and I have Crohn’s disease. I was diagnosed back in 2002, and for one year tried every standard Crohn’s medication (Asacol, 6MP, Prednisone) and nothing worked. In 2003 I started Remicade, and the pain stopped almost immediately. I took Remicade from 2003 to November 2009. On 11/2/09 I had an intestinal blockage due to the Crohn’s and had a CT-scan done. They found malignant tumors on each of my kidneys approximately 3cm diameter. In 2002 I had a CT scan to initially diagnose my Crohn’s and the scan specifically said “no masses”. My family has no history of cancer. The growth rate of Renal Cell Carcinoma is 3mm to 6mm per year. I was on Remicade for 6 years, and the tumors were 30mm each on 11/2/09 (growth rate of 5mm per year). Is this just a coincedence or did Remicade contribute?

  19. I am in severe pain I have lupus from remicade they said it’s reversable i/m very short winded but no one has checked that yet on my lungs.Ther is not a place wher i don’t have red spots that are burning like fire. I went to Little Rock 3 times last week for infusions of steroids that have albut put me in the bed. my skin is peeling face swollen red . I am so fatigued i can barely go up steps. This is costing me lots of money. My mouth is peeling & burnig I can hardley eat. I was taking this for Psoriac arthritus & psorias but this is worst . My Dr says this is reversible but what am i gonna do just keep sufering until it kills me or goes away. I’m not a wimp I have endured a lot of pain but this is bad I hope now one has to go thru this.

  20. Trying to find someone to stand by all people who suffered from this nasty drug.

  21. i was on remicade for crohns disease, this drug was not created for this disease, it was heavily marketed to me and gave me a false feeling i was getting treatment, instead i lost so much weight i looked like a skeleton and lost my job do to time spent recieving these infusions and sicknesses due to my weakened immune system, now i suffer from severe backpain but my crohns started to get better long after i stopped when i upped my asacol dosage and added liadl isn’t it suspicious that this drug is suppossed to take so many treatments to work? in my experience flare ups always heal with time

  22. I just want to say how sorry I feel for those of you suffering at the hands of this so called “miracle” drug. I was scheduled to start Remicade due to sever Crohn’s disease, all other drugs seemed to make things worse, so reluctantly I agreed with my then GI doc to start treatment. I spent about a week researching as much as I could right up until the day of my first infusion. A black box warning had been put out on the drug just within days of my research which helped me to make up my mind. I talked to other patient that were on it and all said how wonderful it was, and how they felt they had gotten their lives back. I still decided not to go through with it. I decided to take my diet serious and do whatever I needed to do to lower the stress in my life. I still have Crohn’s but I haven’t been back to a hospital in over two years (before this I was in ER at least once a month with blockages). Everytime I go for my annual colonoscopy my doc says I should go on Remicade. I say NO! Now, one of the lady patients that told me how wonderful the drug was, is having infusions ever week. She can no longer go to her job on a military base and works from home. I think the developers of this drug became very rich, along with J&J. I feel blessed not to have given in to the pain. I think we should look very closely at these new drugs before we EVER become guinea pigs. People change your eating habits, exercise as best you can, and get pain meds to manage your pain, but don’t risk trying this drug. I am convinced that it is toxic and causes worse damage than the disease itself.

  23. I am 46 and was on remicade for over a year, I was diagnosed with Inflammatory Spondyloarthropathy in 2007 prior to having 1st stage liver disease(NASH) diagnosed in 2003. the Dr told me she does not do diet or alternative medicine. Just Medication to help with the pain. I started with Humara, then embrel and last but not least remicade. What i have come to learn the hard way was with the liver disease or lack of liver function it changes the way the remicade affects your metal status and lots of abdominal pain . I eventually lost my job because i forgot to change a FMLA request to personal time. Needless to say i lost my job. So when my insurance had to change i had a very large deductible to meet, so needless to say i could not afford my remicade any longer. but the signs were all there; depression,fatigue, forgetting to pay bills, losing car insurance for 3months and not knowing until after the fact, getting lost or confused easily. But now that detox has set in i am not myself but my head is becoming clearer and the abdomen pain has stopped .
    I was on 600mg every 6wks and on my FMLA papers the Dr said this would be for a life time. I count my blessings i lost my job, but now i know remicade was not really helping, i did find out i was allergic to wheat, i stop eating wheat and the swelling and some of the pain subsided. I went to a lady that does Bio-feed Back. She was the one who told me i was allergic to wheat and it is a inexpensive and painless exam compared to all the other Dr’s I see and they just know about medications
    Keep the faith, you do have a gate keeper. Trust your family and friends that know you the best. If they tell you something is wrong with you, listen and note the changes from beginning to end. Talk about the good the bad and the ugly

  24. My wife was 45 yrs old when she started taking Remicade, her 5th infusion her fever spiked and they stopped the drug while the Dr. contacted the manufacturer, the manufacturer said to give her high doses of Prednisone day before and day of infusions. this seemed to help, she has always been extremely active, she had a good job as an engineer repairing equipment and such. she has been in a wheelchair for the last year and can not stand or walk.
    Her 7th infusion she ended in the hospital for 19 days while they ran every imaginable test. they concluded she has demylenating of her nerves and may never recover.
    She started taking Remicade for her severe arthritus, but the results are so much worse!

  25. I took remicade for 4 months and developed a pneumonia that was not diagnosed for months. Ended up on a ventitaltor in the hospital for next 3 months and almost died. I am suing them. They had knowledge of these problems but didnt warn. Now I am disabled and on oxygen for the rest of my shortened life and may eventually need a lung transplant. The problem is that most people probably die with remicade induced lung disease without ever being diagnosed because doctors short of the mayo clinic don’t know to look for it. They think its an infection (viral fungal or bacteria induced) so they try to treat with antibiotics. But remicade also causes autoimmune disorders that will only respond to steroids (the opposite of antibiotics). So nobody really knows how many people they killed because they die without diagnosis. A jury in Texas awarded 19 million against Centocor in a remicade suit. When you consult a lawyer tell them about that case and it may help to get them to sue Centocor for you.

  26. If you live in the Southwest or areas known to have high incident rates of valley fever (Fungal Infection) – PLEASE BE AWARE IF YOU ARE ON REMICADE!!! After infusions, you should never go outdoors during windy conditions. I’m not sure if masks help or not, but here is my story.

    I contracted valley fever while on Remicade. My GP misdiagnosed me for several weeks before finally giving me a chest xray and discovered large fungal nodules in my lungs. These nodules do not go away and must be treated with fluconazole on a daily basis for the balance of my life. Fluconazole simply causes the fungus to remain dormant. If I ever stop treatment, the nodules will begin to grow again and eventually migrate to the brain and will lead to death.

    This happened two years ago and I am absolutely livid. I simply do not understand why the system failed me so badly. The risk was known. Remicade virtually eliminates your immune system which leaves you utterly exposed to a host of opportune diseases. I am outraged that I was not ever given any warnings about this. I live in Arizona where valley fever is prevalent. My doctors and Rheumatologist KNEW I WAS ON Remicade and NEVER SAID ANYTHING ABOUT THESE RISKS. And when I first contracted symptoms, they were clueless as to a possible valley fever diagnosis. My life has been unalterably changed over something that could and should have been monitored more rigorously.

    -Sick and pissed off in Tucson

  27. I am horrified reading these comments, however, have experienced some of the same. Remicade was started on me when I spent 10 days in the hospital in March2009, because of a blockage, Crohn’s is my “thing”!. The third treatment in June, I literally thought I was going to die. Fever, joints hurt so bad, could not get out of bed, couldn’t lift head much less body. My doctor basically called me a wimp and told me although treatments might seem rough, it was good for me. I had done much research and had so much trouble from other drugs…gave it a try…Dr. has never once done follow up test that are supposed to be done. I refused anymore treatments, but my family pressured me into one more try this month. Again, immediate problems. I will not do again and I am glad to have found this page to have I guess “prove” of the syptoms and reactions I had, instead of being made out to be a baby about it. I would be glad to join any fight against this drug. I too, believe that diet….keeping inflammation at minimum is the best that can be done for crohn’s . Mot of the drugs lead to way to many complications(steroids!)

  28. I am 44 years old I have suffered from Crohn’s Colitis for 3 years, I tried everything from wheat free and gluten free diet, accupuncture, bio feed back, vitamins/probiotics, you name it, every alternative medicine out there I ended up hospitalized at 88 lbs 5 blood transfusions, so many sores in my mouth I couldn’t eat, I was on medical food (TPN) for bowel rest for 3 months nothing worked, I started Remicade and Immurane after many years of trying to stay drug free, I got my life back, I am now 125 lbs, I work out again, I have my old life back, and I never get sick, I have 3 kids who have everything from the colds to N1H1 and I have never gotten any of it, I have no side effects from the drugs, I just got back from a trip to NY City with my children their band played a concert, something I would have never been able to do If I did not take these drugs, I understand the fear and the side effects, but quality of life has lead me to over come me fear and I am fine so far, 1 year on meds.

  29. My wife was on arthritis pills for years and then started Remicade infusions for Ankylosing Spondylitis, for approximately 11 months. Had an xray and TB test before treatment. Remicade stopped helping and was switched to Embrel for 2 months, never worked and developed more swelling and arthritris pain.. During last two months on Embrel, developed cough. Doctor wanted an xray. Was diagnosed with 4 cm (2′) cancer tumor in right lung in Nov.,13 months after starting treatment. She turned 50 in Jan 2009. Unfortunately, passed away in Oct. 09. Light smoker. Coincidence ?

  30. 2 wks. ago I had a giant cell tumor taken off the tendon sheath of my finger, does anyone know if this could have caused by the remicade I’ve been on for a year for psorias and psoriatic arthritis?

  31. hello my name is Jamey and im a 24 year old male living in Central Texas and am living with Crohn’s Disease. Ive been dealing with it all my life and was finally diagnosed back in 2000. ive been on everything from prednisone and pentasa, asacol, even prevacid amongst others. i was most recently put on diclyclomine and azathioprine and had a severe reaction to one of them and ended up in the hospital for 5 days. Needless to say nothing thus far has worked like it should. Now my only option seems to be Remicade and i’ve been doing a lot of research and am reading a lot of horror stories that have me really scared about my future… can anyone help with advise or prior experiences (hopefully positive) alternative treatments, anything really…please. God Bless and Thank you

  32. I want to thank every one who has posted on this site. I have a 11 year old daughter, and the Dr is really pushing the remicade treatment on her. They went so far as showing us the comfortable room with the big screen tv’s but I was very unconfortable with the lak of information they was unable to provide.But I have decided not to give her Remicade but the question is what is next is there any other mediation I can inquiry about?

  33. I am 48 years old, I started remicade infusions in July 09′ to control ulcerative colitis symptoms. Remicade did heal my colon, but since October I have been dealing with very painful stiff joints & muscles. Stiff neck, sore throat/trouble swallowing, sometimes low grade fever and sharp pain in elbows, wrists and ankles upper arms. I have been told that it possible “remicade induced Lupus”.Many days I need help getting dressed and performing simple tasks. I have stopped treatments with remicade (not had an infusiion since Dec. 21st.) However, I am having no relief from these symptoms and am worried they will not subside. Has anyone else had relief from these symptom when remicade was stopped?

  34. Deb: Same thing happened to me with Remicade. I see from my infusion records that they dosed me with almost 100 mg more of the remicade that my weight called for, twice. It has been 14 months since my last infusion and i still have chronic joint pain. Unfortunately, now I recently had a positive ANA test which indicates systemic lupus. I know Remicade is the culprit, i dont know why lupus is not listed as a side effect. I am also concerned b/c I have numbness and tingling in my body and I see MS is a side effect. I wasnt aware of that or the lupus when I took the drug. They concentrated URI and joint pain. Like you, what i had was way worse than mere joint pain, and i surely did not ask for another disease. And of course now the doctors want to medicate me for the lupus too. Its very frustrating and gets diificult to stay positive.

  35. I am 41 and have had ulcerative colitis since I was 15. After a severe flare-up in 2008 I was placed on Remicade and I too hailed it as a miracle drug. My colitis has been in remission ever since. The remicade did do what it was supposed to do for my UC but I am in constant pain from head to toe, stiff (almost paralyzing episodes requiring ER visits) muscles and joints and fatigue. I know this has to be from the Remicade because I never had these issues before. I am calling my doctor today to schedule blood work and x-rays and may stop Remicade altogether.

  36. I was on reicaid for close to 2 yrs maybe longer very costly, was dianosed in1999 with Psoriatic RA ,these treatment was like the miricle drug,and help the severe pain, athough I developed a consant cough for a period of 3 yrs before my family doctor whom I felt was not listening to me dianosed me with emphasema ,COPD and many conecting problems, the Rematologist that treated me had me on methrotrexate and after a while I started smothering after taking ,so she switched me to Prenisone I begged to be taken off this terrible drug not knowing the bad things but was told Remicade was bad on the liver and had to have blood test each time, I stopped the Remicade the cost was too much and as we all know steriods helps the imflamation but can cause suger and all sort of thing I have begged for other imflamation fighters common sense will tell you any thing that supresses your immune system will cause them dirty little white cells to start eating the good ones,if one immune system gets this low I have been thru it, with pain managment I don’t want a bunch of drugs killing me these drugs are not tested after our gov. has provided them with millions we are guinny pigs to society ,I tried to go off prenisone which landed me in bed for weeks hurting morn. and night, my new Doc. recomended to another rhem. Doc. and she is wanting me to go back on Remicade but have already suffered these symtems and am scared trying new diets for the gut and am in the process looking for a good Homapathic,Legal one for my condition, my Grandmother live to be 104 yrs old they never took the drugs the Doc. gives nowdays.Will say no after hearing about all these people, I want something to help not cover up and cause more problems ,my daughter 20 yrs old on Enbriel I fear for her, want to save her if can’t save myself!!

  37. I was on Remicade for RA several times, even participated in a study. I had great results. However, after restarting on loading dose of Remicade I started having constant headaches, low-grade fevers and night sweats. After about two weeks I had a seizure, was taken to the ER and a Lumbar Puncher was done to rule out meningitis. I was told I had meningitis, but the labs never confirmed meningitis. While in the hospital I had several episodes of numbness from head to toe on my right side. I was discharged and told to resume normal activity and it was OK to drive. The next day my right
    side went numb and I missed hitting a building with my car by one foot. My son called 911 and they took me to a different hospital where they did an MRI and I saw a Neurologist. I had swelling in my brain which continued to get worse causing speech difficulties, cognitive difficulties and difficulties walking. I spent 3 weeks in the hospital, 4 weeks in rehab and was told I would not return to work. I did go back to work 3 months later. 2 1/2 years later I had an MRI to look at my pancreas. The radiologist found several suspicious abnormalities on my spleen. They have been called tumors, adenomas, lesions, etc. Went to oncologist who blew me off, have been told I need to have a biopsy by several DRs. just can’t find one to do it. Having night sweats, fevers and headaches for 4 months. I have had enough!

  38. I am a 49 year old female that has had 3 home infusions of Remicade and like most of you I started experiencing joint pain, inflammation on March 16th, 2010. I had my first infusion 1/14/2010. I tested positive ANA and obviously pharmaceutically induced Lupus Like Syndrome. My dermatologist that put me on Remicade for my psoriasis wanted me to continue with the drug and after another doctor sent me for bloodwork I emphatically said no on anymore infusions. I am now on a predisone protocol to remedy the horrible side effects from Remicade. The pain systemically moves around. So far I have pain everyday but have only been on predisone for 4 days. I also take Advil like it is candy 800mg/4x a day. The pain is unbearable and has effected my life and work as a massage therapist. We must all get the word out that this drug HAS TO BE TAKEN OFF OF THE MARKET.

  39. I’m 42 and had severe UC since my senior High School year. On and off steroids ever since a little over year ago, when I started Remicade. Guess I’m one of the lucky one’s who hasn’t suffered from side effects. This was a gift that finally removed me from the ugly steroid dependency. Thank you LORD! I do have some Arthritis in my hips and lower back that I can’t really say is from Remicade because Arthritis is a side effect of UC and has haunted me prior to Treatments. I found Celebrex has helped me with reducing the Arthritis.

  40. February 2010 2 weeks after my first IV Infushion of Remicade I developed excruciating pain that led me to emergency room. My joints started to swell and emitting alot of body heat. After 12 hours this started my hands was swollen and almost unuseable along with left knee very swollen and right one beginning to swell and left me unable to walk. I was given heavy doses of steroids through an IV to bring down the swelling. After 32 hours of treatments the swelling subsided but have left me now with alot of joint pain in my elbows,knees, and hips along with fitigue feeling. Its been 2 months and still in alot of pain. I have lost my relationship with my family Dr. because he thought it was all in my mind. Him and I will never speak again because I couldn’t hold my tongue and let him have it.

  41. I’m 44 yrs young and in February 2010 2 weeks after my first IV Infushion of Remicade I developed excruciating pain that led me to emergency room. My joints started to swell and emitting alot of body heat. After 12 hours this started my hands was swollen and almost unuseable along with left knee very swollen and right one beginning to swell and left me unable to walk. I was given heavy doses of steroids through an IV to bring down the swelling. After 32 hours of treatments the swelling subsided but have left me now with alot of joint pain in my elbows,knees, and hips along with fitigue feeling. Its been 2 months and still in alot of pain. I have lost my relationship with my family Dr. because he thought it was all in my mind. Him and I will never speak again because I couldn’t hold my tongue and let him have it.

  42. where was the FDA in all of this? why are so many bad drugs on the market now days, who is testing and doing research on these drugs?who is regulating what can be put on the market and what is safe for us to take?

  43. I strongly belirve that remicade infusion treatments caused avery

    nasty infection called MRSA which resulted in the removal of a

    knee replacemnt and two futther surgeries. I limp very severely

    and have weakness and pain whenever I walk. I have seen numerous surgeons

    and nothing more can be done

  44. I am 45 and was diagnosed with Crohn’s disease around 1995. In 2001 at age 36, I was diagnosed with breast cancer. I finished cancer treatments in early 2002. Six monrhs later I lost my wonderful son in a horrible car accident. He was just four days from his twentieth birthday,and a college student , studying to be an attorney, so I am no stranger to pain either. My new problem is in October 2008 I went to a new Dr. in Cleveland Clinic. He said that he would never recommend anyone who has already had cancer to then take meds like remicade,humira and so forth. So I then had my first surgery for Crohn’s. I almost didn’t make it. My recovery was very bad. I know the surgeon was nervous about my condition. A three to five day stay ended up being eleven. I did recover, however the surgeon said that ” I dodged a bullet”. That was two years ago , since then my husband has lost his insurance , caused from being laid off from his job for a year and a half. So we are back on my insurance. I work at a hospital, and recently have seen a new Dr. for my Crohn’s, and a new surgeon since I now need another surgery. This will be next week. The problem I am having is my new Gasterenterlogist wants me to then go on Remicade. I am so scared because I already had cancer once , I can only guess what my increased chances will be with a medicine like this.
    Has anyone been in a similar situation?

  45. Shyrlie,
    My advice to you is don’t go on the Remicade per my friend/chiropractor…it will shut down your immune system..very scary for someone who has a history of cancer.
    See my comments on April 5,2010. I am recovering well but was on Prednisone & Meloxicam for the joint pain and under the care of a Rheumatologist. I am almost 90% better however my psoriasis returned afte 3 infusions of Remicade. Good luck to you. The last month has been a battle for me but staying positive that I will return to my quality of life.

  46. I have been on Remicaid for over 3 years now. In the beginning the doctors could not figure out what was wrong with me. It started as severe uveitis, then went to severe swelling of joints with a lot of pain. I was finally diagnosed with Chron’s Disease. All was fine until after my last treatment, I had a Grand Mal Seizure while driving thank god everyone is OK(my daughter was in the car with me). The doctors think it is the Remicaid which caused this, know they have no idea what they will use to treat my Chron’s I have tried everything.

  47. Well, I nearly died today from my 4th infusion of Remicade for my acute Chrohns condition(I am 40yrs old and have had it since in my 20;s). Within 15 minutes of the start of my infusion, I felt like I was going to self-combust-it began as a sort of hot flash that started at my toes right up to my face and the burning did not stop-it was so hot at the infusion sight I thought they were giving me a burning liquid. I called out for the nurse and even at this time my blood pressure sky rocketed to 150/90 within 10 minutes, my heart was pounding out of my chest and my chest was tightening!!!! The doctor seemed very nonchalant about the whole thing and just ordered more Benadryl pre-med-nurse even stated after continuing with the remaining treatment that “it was good that we could continue at a slower rate or we would have had to throw the bag out at $3,000 a bag!! Guess my near death experience/cardiac arrest was not full priority!!! I go see my specialist next week and am going to come off the drug for good-not sure what am going to do now-will see.

  48. I was diagnosed with Crohn’s disease and colitis in 1987. I had spent years on prednisone and Dipentium. In 2009 (Jan) I became really ill my weight was down around 100lbs was very anemic, I did all I could to go to the doctor appt. Finally in June I found another doctor and after taking all of the tests I started Remicade. By January my weight was up to 125 I felt so good, It was like I was finally living. Well in March things started going not so well again. I have kept the weight on but I feel sick all the time, My blood work came back bad again. I’m having iron 3x aweek and B12 shots. Ive had a upper scope and lower one. The found I had a stomach infection and during the cat scan of my stomach area the saw noduales in my right lung and something on my liver. 2nd Ct found rice like noduales in both lungs. I have back pain all the time. I have a MRI on the liver planned for this Friday and a mamagram for Tuesday to see if the spots on my lungs is cancer from somewhere else in my body. My Remicade infusion was canceled today the doctor said the spots could be caused by remicade. (histoplasmosis) So I now have a Cancer doctor, Infectious disease doctor, primary doctor, Crohns doctor, special labs, infusion center….but ,good news is I have still kept my weight on. Oh did I say I have my first grand baby due in 3 weeks.
    But at the end of the day I’m ok. If anyone has any ideas for me I would greatly appreciate it.

  49. Julie,
    What was the reason that you went on Remicade in the first place?

  50. My wife had her first remicade infusion the first of november 2009 the second december 2nd. 2009 she said this
    was the best she felt in a long time. about dec.20th. she said she was cold and could not stop[ shivering next she would be burning up on dec.23rd we checked her tempreture it was 103 I called our doctor he put her in the hospital .her liver, kidneys,and gullblader tested normal 1 week later her tests reviled problems in this area ,as the days went by she became weeker and weeker she died january 23/2010

  51. I am 49 yrs old. I was on Remicade infusions for 6 years. July of 09 started with a small rash in palm of both hands. Now it got so bad that it spread through out my body along with arthritis and lupis antibodies, which I never had. Someone needs to be held resonsable for ALL of our pain and suffering, but no Lawyer will touch it. I have spoken to about 10 Lawyers who all said it is to costly to them to file a lawsuit or said that what I am experencing is the side effects from the Remicade.

  52. My mother has suffered alot and it all links back to Remicade. Just because it not current I also have not been able to find an attorney to take the case. Due to the fact where we live most tell me hte staue of limitations is up, my mother continuely gets sores on arms,back,scalp and doctors can’t explain why. Do you think if enough people went together we could help end the paina dn suffering this drug has caused?

  53. deb & nancy &anyone else that experienced drug induced lupus from this ridicoulas drug It’s been three yrs since my experience and have been in pain since, went from no joint issues at all, (being treated for crohns) to all joints hurt, and extreme fatigue. have just recently changed my rhumy and now been diagnosed with fibromyalgia and the treatment so far helps, but still if too active get extremely wiped out and sore, and the feeling that someones shoving a screwdriver in my joints. when first having reaction went to E.R thought i was having a heart attack at 35 yrs old, and told i have nodules that was causing it, wth, but then soon after all hell broke loose and a couple hrs into my day it felt like every joint in my body was severly sprained, couldn’t even lay on the couch comfortable. My docs had NO idea what was going on sent me in to a neurological dr. and finally towards the end (about a month) took some blood tests and my anti nuc levels were way high and told me i had a dil. also liver functions have been high for last three yrs and finally started coming down. checked with an attorney to see what could be done because even after being sued they still don’t tell the dr.s or give warning, which is B.S. it has ruined my life and will continue to ruin others til they take responsibility, instead of all the money.

  54. My 41 year old daughter was misdiagnosed with Crohn’s years ago. She received 2 remicade infusions 2 years ago, resulting in lack of muscle control on entire 1 side of body. Head of Neurology reports that she has demylenation in brain { similar to ms }. This dx immediately followed 2nd infusion which was stopped after rash erupted but restarted with dr’s orders.
    Like the other patients, my daughter lost her old dr; the ability to work, her marriage .The case has been passed from attorney to attorney. She is losing confidence that anyone will ever her her story and hold the pharmaceutical company responsible.

  55. Sorry haven’t gotten back to any of this, had talked to a local attorney and he tells us the same thing statue of limitations. I have been researching all problems since the local paper printed an article about side effects of Remicade. My mother was treated with Remicade for arthiritis. Still has no anti-immune system and skin lesions, now in remission two years from the lung cancer. Hate to read all any of you have gone thru, people are people not gunnie pigs. God Bless you all>

  56. My husband was diagnosed with Crohn’s Disease in Sept. 2000 and was given three Remicade treatments over a two month period. The doctors could not get his Crohns in remission. In early Feb. 2001 he began getting symptons of the serious side effects of Remicade and was hospitalized for a month before passing away. At that time there were approximately 15 known side effects. At the time of his death he had suffered from 9 of them: it had destroyed his immune system rendering him virtually unable to fight any infections. He developed kidney and liver failure, ARDS, pneumonia, sepsis, congestive heart failure, other infections. To this day, no one will ever convince me that his death, at least for the most part, was not directly linked to Remicade. I urge anyone considering this form of treatment to seriously study its benefits as well as its risks. My husband was too young to die at the age of 53.

  57. To all of you,
    I have been checking this page almost everyday to see if anyone has contacted an attorney. Ken, I like you also am still dealing with the side effects from the 3 infusions of Remicade. I had 2 in January of 2010 and one in February. It is now the end of July 2010 and still have swelling of the joints, inflammation etc. My psoriasis (which I was treated for) came back after the treatments stopped along with the pain that I didn’t have before the treatments. I am under the care of a Rhemuatologist now since March 2010. I feel I will never be the same. I will be turning 50 in March and hope that will be a good birthday. I urge all of you who may decide to go on Remicade to SERIOUSLY CONSIDER the side effects. Do any of you know about the other pharmaceuticals ie; Humira, Stelara etc and their side effects? Unfortunately there is no known cure for psoriasis but hopefully one day there will be. Had I know about this site, I would have never tried this drug. My sympathies to all of you who have lost a loved one allegedly from this drug.

  58. I have been on high doses of Remicade through injections at the hospital. At first, I was going every 8 weeks, but I suffer from RA and I was having severe joint pain and swelling so the Rheumy uped it to every 6 weeks. In June, I learned I have a lesion on my thyroid large enough to cause difficulty swallowing. I have been taken off Remicade and am suffering from the pain and fatigue of RA and I am scheduled to have my thyroid removed on 8/2. It has cells consistent with follicular cancer. Has anyone heard of thyroid or throat cancer as a result of taking Remicade? Now that I cannot take it, I am concerned that I won’t be able to take anything to help with the joint pain and swelling. I am 63 but I want to be active.

  59. I am 40 years old, I began Remicade in Sept 09 for treatment of fistulizing crohns. I had my 5th treatment in Jan 10, within days of this treatment, my palms, soles of my feet, arm pits, most crevices of my body were broke out in painful pustulars bumps. My gastro sent me immediately to see a derm; I was diagnosed with pustular psoriasis. The derm prescribe ointment. Within days my hair began falling out and my hands & feet were in excruciating pain, nearly unable to walk or grasp anything. These pustulars burst and then the skin peels away, my skin is extremely dry from the light therapy the derm started me on and the ointments. The gastro feels this is definately caused from the Remicade. The Remicade treatments were cancelled immediately. I was told by the doctors they believed these symptoms were temporary. That I should begin to clear up once the medication was out of my system. Well here it is July and this has not cleared up. Now the drs say the meds are out of my system and they believe this it is not temporary. Everytime I get the slightest glimmer of hope that this is clearing up, I get another onset of new pustulars. Now after over 40 visits to the derm, I truly agree that my crohns issues were alot easier to deal with than the affects of this horrible drug. And I had to have surgery in June 10 for the fistulas anyhow. This was a horrible medication for me that has side affects way worst that the problems it is attempting to help. And by the way I never had any sort of psoriasis prior to the Remicade treatments.

  60. To date I have not read a similar experience to mine and hope to. I have RA for 26 years and was on Enbrel for several years. My Rhuematologist switched me to Remicade as Enbrel stopped working. I had a severe allergic reaction on the first full dose and life will never be the same. I started with extreme fatigue, blurred and double vision, complete loss of balance, vertigo, seizures, etc. It took almost a year to get a diagnosis until I was almost completely bed ridden to learn I had another autoimmune disease called Neuro-sarcoidosis. I still have many of my original symptoms but also more serious symptoms have progressed due to granulomas growing in my brain, brain stem and spinal cord. I am on many medications and treatment with powerful drugs like prednisone, mtrx, cytoxan, neurontin, keppra and many more have not been effective. I would appreciate hearing from anyone experiencing a nervous system disorder like mine.

  61. To Tracy on her comments from July 16, 2010
    My fiance’ did not take remicaid yet though his gasterenterologist wants that to be the next step he has Chrohn’s disease. He did take humira in February of this year and has since had surgery having had all of his colon removed but a foot and a half the surgeon said his insides looked nothing like the cat scans or xrays. They removed over 25 lbs from him which was like cement. The pathology reports also showed diverticulitis which he had never been diagnosed with before. The cat scans and xrays showed two areas that needed fixed right before the humira injections. Which his dr. said to try for 2 months. If he had contnued to take the humira he may have died. He needed surgery to begin with. The dr. seemed awful pushy and is again being pushy to start remicade treatments now. Which he can’t while he has shingles. Since taking the first 4 injections of humira he was hospitalized for over a week in just 2 weeks after the injection with phenmonia and pleuresy. He was suffering from muscle weakness and bruising. He is tired all the time has no energy. And is in so much pain daily. Even after the surgery he now has developed a case of shingles which he’s been fighting for around 3 weeks and now is having joint pain in almost every joint. He is 37 years old and spends most of his days having a hard time staying out of bed if he even manages to get up. I have seen the father of my two children and the love of my life go down hill so bad since March of this year it breaks my heart. I read through the side effects and problems everyone else has been having from these TNF blockers and see so many things he has never had showing up and he only took the initial 4 injections to start. And its been 5 months since he took those. New symptoms and problems seem to arise each day now.

  62. To Kristy (on her comments 7/24/2010 )…
    Since writing my last email I developed bursitis on the elbow ie;olecran bursitis….basically I had about 8ml of fluid built up around the elbow joint. I had it drained yesterday and was told by the doctor no pressure to be applied to the elbow area. So this has affected my livlihood as a massage therapist. I am going to see the Rheumatologist and going to ask her if the bursitis issue could/is a direct result from the effects of Remicade. I never had bursitis prior. I work for a chiropractor and she tells me that all TNF blockers are horrible drugs. Good luck to you and hope your fiance gets well soon. :)

  63. I do not know where to begin with my journey dealing with Remicade side effects. I was on Remicade for 11 years. Half of that included double doses. It worked miracles for my knees and kept my Crohn’s quiet for many years. NOW..the bad part…it did it’s silent damage. Since five years ago, I have been battling fungal infections on and in every part of my body. I had to see an Infectous Disease doctor and he started the fungal drugs which are very potent. I was to the point of my hair falling out from the Remicade fungal in my scalp, and every where imaginable…to include eyes, ears, breast, groin area, mouth, nose and toe nails. I did not put it all together at first. I WILL NEVER TAKE REMICADE under any circumstances ever again. I am lucky the black box warning came out and a friend told me to research because people died from fungal infections taking over their organs. To this day, I still have to be careful because some of the fungal remains in my system. I feel lucky to be writing about this after much I have read. I kept complaining and telling the doctors this was not normal for me ..I had never had any issues with my skin or my hair falling out to the point of calling a wig business to inquire. I am leaving a lot out about my journey but the most important thing I am trying to get across to anyone reading this…it has more bad side effects than listed. I have now been Remicade free for almost 1.5 years. Yes, I can tell a difference in my knees..but that is all I have to worry about then I consider myself lucky. I am only taking .25 mg of 6MP. I am off Flagil and my Crohn’s is quiet for now. I have had two surgeries and have had my fair share of this disease since I was diagnosed at 22 yoa. I decided to share my plight since I still have the fungal issues and hope this helps someone else.

  64. In September of 2001, I started taking the drug Remicade. I have the tape that was given to me by my doctor that mentions a possible side affect of liver damage but nothing else. My Rheumatologist assured me that each Remicade visit my liver count would be checked prior to infusion. No one shared with me the hidden side effects of this drug. In June of 2009, I went out for a 5 mile run and could not finish due to vomiting, diarhea and cramps that felt like labor pains and loss of balance. I felt like I was in a tornado and I could not get out. My doctor thought that I had a stroke and she sent me for an MRI. They found that I had permanent brain damage, a growth on my cerebellum, a spot on my neck and spine. I was admitted into the hospital for 5 days, pumping me with steriods and pain medication. My Neurologist did a spinal tap to rule out MS and Sarcoidosis. I have gone to three neurologist and each one has told me that the drug Remicade has caused this damage to my brain. I was admitted into the hospital in January 2010 with the same symtoms as above. It started with bronchitus which led to the other symtoms. I was told by my neurologist that I will have episodes for the rest of my life that can be started by a simple cold. Yesteday, I had a biopsy of my thyroid to see if I have cancer. I have contacted several lawyers and no one is interested in taking the case. I lost my job in January 2010 and I’m now disabled. Who do we contact? Who will be held responsible for this? Who will pay for the MRI’s and hospital visits for the rest of my llife.

  65. I have been on Remicade since it first came on the market. I have severe RA. Even on Remicade my inflammation levels are still high. My rhuematologist is looking at changing me to a different drug.

    My question is anyone out there having issues with aching teeth who is on Remicade. I know, strange question but I have had it all along. Now the interesting thing is im needing root canals in my upper teeth where the nerve is now destroyed. I have alot of calcified areas in and around my upper teeth as well. Has anyone had this same side effect from Remicade? My Rhematologist said some of his patients have complained about aching teeth but that is all he said.

  66. In 2 weeks i’m due for first infusion for Chron’s. Remicade. I’m 60. I’ve had a heart attack and a broken back but i’m generally in good health except for Crohns, I’ve taken Entocort before, 9mg/day. Didn’t work.

  67. After years of suffering from stomache problems I was finally diagnosed with Crohns. I have alot of scar tissue in my small bowel and was put on prednisone at first which helped but they only wanted me on it for so long. I have now received 5 remicade treatments and from the first one on have experienced joint pain. Funny thing is though, it seems to all be on the right side of my body. They always give me the injections in the right hand. My hand, wrist, arm, shoulder, back, hip and legs are killing me. I have mentioned this to my Dr. since the first injection and he keeps telling me he’s going to have a rhuematologist see me, but that has yet to happen. He hasn’t done any testing to see if the medicine has done anything with the scarring in my bowels, but keeps suggesting that I keep taking the drug…..I go back to him on Tue. and am telling him I am done! After reading all these comments, its just not worth it. I just turned 30 and have 4 young children. I am also experiencing cramps in my lower stomache. If this drug ends up causing me any cancer or other severe disease, I WILL find a lawyer to take my case, even if it takes years to do…..So sorry for all of you!!

  68. Well I went to the dr. Tues. and it didn’t go so well. Told him the pain in my hand, wrist, arm, hip was still there. All started after starting the remicade. He finally sent me to the Rhumy, which said it was from when I was on prednisone back in Jan. I must have felt so good that I over did it and now am suffering…..Does that make sense? I find it funny that the hip pain started right after my first treatment and the wrist pain started after my last treatment in Aug. The rhumy says I have tendanitis in my wrist, tennis elbow, and brusitis in my hip, but told my GI dr. to keep doing the remicade. What do I do? I feel like they are trying to cover for the drug. Any suggestions?

  69. In response to Amanda (September 2)….Amanda please get off the Remicade. I had 3 treatments (see my comments (April 5th/26th). We are now in September and I am just starting to feel well again (keeping my fingers crossed). However this is not from doing much activity that I feel OK! When I start seeing clients (massage therapist) and I use my wrist, hands, etc or being physically active that I start to feel pain. Oh and did I mention my psoriasis came back with a vengeance and was told by the Rheumy that I have Psoriatic Arthritis now. Hell at this point I have no faith in the medical field much and have resorted to nutritionals and homepathics. Keep me posted. Much luck to you and I mean that with sincerity!! This has been a battle for me. It’s pretty bad when I walked into Costo awhile ago and the greeter had to ask me “maam would you like a scooter?” That was back on Good Friday!! I was that much in PAIN that I couldn’t even probably maneuvered the scooter around in the store. Oh and I ws only there to pick up an. Rx for Prednisone. Hopefully those days are behind me now.

  70. i AM 35 AND HAVE BEEN ON REMICADE FOR 2 AND A HALF YEARS, tAKING IT FOR BEHCETS DISEASE, JUST THE PAST 6 MONTHE HAD, 6 MELINOMAS REMOVED..tHE DOCTORS ARE TELLING ME ITS THE REMICADE AND IM SCHEDUELED FOR AN APPOINTMENT WITH AN ONCOLOGIST TO SEE IF ITS SPREDING..i AM SWEATING ALL THE TIME EXTREMLY AND WEIGHT LOSS, IM DOWN TO 81 LBS,,i FEEL LIKE IM WAISTING AWAY, BUT THE REMICADE KEEPS ME FUNCTIONING..i DO NOT KNOW WHAT IS WORSE THE CANCER OR THE DISEASE..

  71. My son was diagnosed with leukemia in 1997 at the age of 5. he relapsed 4 times before we finally had a successful bone marrow transplant. He was on chemotherapy for seven straight years and also had active aspergillus fungus infection twice. we were sued for 3 million dollars when our insurance company decided to not pay anymore. we have lost everything to the medical industry. He has spots on his liver that nobody knows what they are. he has had over fifty sugeries. He has been in remission for 5 years. he is now 18 and has had Crohn’s for about two years. He gets Remicade about every six weeks and now all this information has come out about remicade. This drug scares the crap out of me because I don’t want anything else to happen to him and now I am hearing that it could also cause the same cancer that took forever to get rid of. the doctors say this is the best drug for him. I will say, aside from all the side effects the remicade does at least seem to keep the crohn’s at least somewhat in check. since he has been on the remicade he has been diagnosed with restless leg syndrome or at least that is what they are calling it. his legs would always start to shake when he got the infusion and now its constant. sometimes he feels like hundreds of needles are sticking him at the same time. he sweats at night and sometimes has fevers. I cant believe all the side effects this drug has produced. I am told if I take him off the remicade he will not be able to go back on it. He constantly has joint and stomach pain,is always tired and is starting to give up on life. I don’t want him to take this poison anymore but it seems like all the other meds that are out there have their fair share of problems as well. we are going on our 14th straight year of living with all these medical issues and it’s insane. Believe it or not I read that a lot of people take or eat marijuana and say they get relief from it but doctors don’t seem to endorse it. can anybody please point me in a direction that may be better for my son? I feel that this remicade is going to be a monster and maybe pulled off the market if the studies get any worse.

  72. Hi. I am updating my entry from July 2010. My daughter Carole’s statute of limitations runs out at the end of October. The 4th attorney group is reviewing and so far tells us that there are not enough valid documented complaints to move forward with a lawsuit. Carole’s case is well-documented.

  73. I took 3 remicade treatments back in 2005/2006 for crohn’s disease.
    Did not help and since then I have unexplained pains and unexplained nerve pain/damage. The only thing I can say is if you have crohn’s make sure you get on a whole food type probiotic.

  74. I believe the cure is worse than the disease, at least for me. I have had 3 bowel resections and would do it again. I get 6-10 years of good living with each one. No prednisone or remicade for me EVER again. Make sure you get nourished. If you have to, do protein shakes they are pretty much already digested for you.And, you can add whatever you want to flavor them. I love chocolate syrup and banana in mine. Buy organic type vitamins they don’t upset the stomach like the synthetic ones. Go to a Holistic Store and they will help you with an alternative treatment. Good luck to everyone and god bless.

  75. I woke up in 2006 and couldn’t walk, i didn’t let it stop me, i worked at Arby’s and wore a boot, busted my butt, had a manager belittle me, and harrass me. I had doctors notes, a med they put me on got me ill, i got fired. Inflammation persisted.. It has gone on 3 years before they figured out true diagnosis, only because i got ankle scraped and had a nodule on my shoulder, which they removed and they said i had Rhuematoid arthritis and Fibromyalgia… (I have tried Methotrexate, salphasalazoid, Humira, Embrel, so many meds.. My body doesn’t except anything.) I get all the side effects and the releif is good, but side affecets were worse… After they did the removal of the nodule, i was put on Embrel, my immune system went low, i was sick.. They took me off of it.. My body is so different then most.. Humira is suppose to stay in body for 2 weeks, when i stopped, it stayed in my body for a month and a half… The Embrel stays in a week and i stopped and it stayed in my body for a month, i think the built up of medicines in my body are toxic and overdose.. Doctors, don’t understand… So after all the removing, i got a rash on my hands… no one knowing what it was, i said it was psoriasis…the doctors thought it was exzema.. So from January 2010 to July 2010, my body attacked so hard, i was sooo crippled, and i couldn’t lift my head, discs popping out, legs needed to be drained, couldn’t walk, throat burned, lungs hurt and it was to much to handle. Went to Marschfield clinic, and found out i had Psoriatic arthritis… I have it severely he said, at my age of 37, he can’t believe i am dealing with this.. What are we suppose to do, no jobs want to hire me… Social security, says i am to young, that i dont fit there guidelines, what the heck are people suppose to do that have stuff like this.. We didn’t ask for this… I would rather be out in the work feild,, This is nuts… So now i got put on Remicade, i was so leary, i don’t know, but i just don’t feel good about meds, since humira and Embrel… Remicade you have to build up.. So i had first one on August 31st, i am keeping a journal.. I can walk and do some light stuff but the pain is intense, headaches are more. I had such pain in my lungs and heart, stuttering, heart palpitations, blood pressure goes up, after it was given. i felt good for two days, dots on legs were gone.. Second Dose Spetember 15th, still same affects and pain still there, doctor doesn’t think nothing of it… Beffore my third infusion on October 13th, besides worring about my liver, now my regular doctor found out that my glucose is so high.. Went in to get my infussion, then saw my Rhuematologist.. I had blood drawn 3 days prior, he said liver still good.. Today October 21st, i got results on MyChart, liver has gone up, glucose so high, they think i have diabetes, which i never had problems before with glucose… How can they just lie.. You tell them you have all this stuff going on, they don’t care.. Today, i have as usual, cause of Psoriatic arthritis.. ankles, knees, back,fingers, wrists, neck and head… i have pain in my heart and lungs.. Nausea is back and, so tired.. Immune system dropped in the beginning, but went back up, but i have so much pain going on…So looking up things on the computer, wondering why the pain, why the problems with glucose… Remicade is made with 500mg of sucrose and to think i gave up soda to help this diabetic thing i thought i have… They are feeding my body sugar and salt, cause after the infusion, you weigh like 2 pounds more cause of the saline… So now i am triing to decide what would be best? Go back to body being attacked, not being able to walk, open things, can’t take meds, will get to organs, no glucose problems, low blood pressure,no problems breathing, little appetite but feeling other wise, like me OR keep taking remicade, glucose keeps going up, severe pains persists, stuttering, palipitations, heart and lung pain, headaches everyday/pain and pressure, blood pressure going up, have an appetite some what, so very loose of stools, can sleep better, breathing tight, nausea coming back, and stomach pain, right side pain…. Well i don’t know what to do? I don’t know which way to choose, to stop the med and go back, and if i do, its going to pounce on me bad, either way, its going to kill me, depending which one goes first? What the hell, the choice is not easy, but doctors need to be truthful to patients, we have to live with it, not them..

  76. My mother was diagnosed with Chrones almost 10 years ago. After a few years of failed treatments they put her on Remicade. She would go into the hospital every 3 months for a treatment where she would lay there hooked up to an IV almost like a chemotheraphy treatment. It allowed her to live a somewhat normal life without having to run to the bathroom every 5 seconds for a few good years…I guess. However…after 7 years or so on it she started to feel tired and run down and come to find out she had stage 4 liver cancer, a very rare kind called “renal cell carcenoma” which we were informed is only seen in approximately 5 people each year. My mother worked for a surgeoun and was the kind of person who notonly worked in the medical field but was in and out of the Dr’s all the time. Unless there is no reason for an MRI the cancer literally went unnoticed for God knows how long…We think it grew over the course of a few years only because we saw how fast it came back and killed her. In any case they initially assured us she would actually live thru the surgery… and she did, only the cancer came back right away (like 2 weeks later) and she died only 7 weeks from the time we found out she had cancer. This cancer does not run in our family, the Dr’s wouldn’t say it outright but several did imply it was the remicade. When they found out she had cancer they immediatley stopped the remicade. REMICADE is HORRIBLE for you. I am trying to save your life here….find alternatives and do your homework about this drug. My entire family all know in our hearts that the remicade shortened my mothers life ALOT. She was only 66 and her mother lived to be 85!!!

  77. CORRECTION ON MY POST***RENAL CELL CARCENOMA IS “KIDNEY” CANCER*****NOT LIVER

  78. My fiance was on remicade for AS. Last winter he committed suicide 3 days after receiving a remicde infusion. He had no history of depression. psychiatric problem or drug/alcohol abuse. He seemed to be in some kind of confusional state which I think was psychosis. Beware there are psychiatric side affects of remicade, although I have been unable to find accurate statistics on occurance.

  79. It’s has been 2 years since my last infusion for Crohn’s Disease. I was diagnosed with Lupus, Stevens Johnsons Syndrome, and MS for review 2 years ago. I am still suffering from sever joint pain everyday, tendonitits, short term memory loss, tingling and burning sensation in my arms and legs, major fatigue, throbbing in my arms, bone pain in my legs, lack of color pigmentation, still have the protruding discs in my neck, and my thumb will get stuck in a “Fonzy.” I stopped stuttering, I had the tumor removed, and I can turn my head. Remicade might be your miracle drug for the moment- but I think the point of any drug is to make your future brighter.. BEWARE OF REMICADE!! I was never told about the side effects of this drug- I never received anything on this drug. Everything was taken care of by the Dr.’s office, and it was put on and “Emergency” urgency. I had the surgery he was trying to stop- 2 months after my last infusion. It has changed my life for the worst.. Crohn’s was no walk in the park, but atleast I could go for a walk in the park. What can be done??

  80. I was put on remicade for severe hidradenitis, I took it for a year, I had active infections prior to infusions. I experienced horrible hives, headaches, leg pain, i even think i was having seizures! IMy throat would close and i would make a horride gulping sound! Long story shrt, i quit this poison a year ago! The nurses at the infusion center said i needed i.v vanco and to stomp my feet with derm! I did and it got me know where! I have been so sick with the HS after using that garbage! I get abscesses “daily” and my armpits got worse, much worse! And other areas! It is horrible! Im dizzy , nausea, clouded thinking, “severe fatique” Oh! and i delevoped a nice findgernail fungal infections in 3 nails, :horrible! The derm just shines it on! My fingernails FALL off! He totally denies that the remicade was the cause! He’s dead wrong,my entire family knows it to! Remicade isnt even FDA approved for this disease yet i was given it to suppress my immune system? Now, sicker than ever, the abscess pain is unbearable! Now this doc wants me to try Humera? WHAT? I dont think so! I dont feel right at all and i know this poison wreaked havoc on the HS! What can i DO? These doctors dont care! This has ruined my life!

  81. I was given remicade for 2.5 years for crohns desease, the doctor said it was the worst case he’d. Ever seen along. With IBS , he gave me several colonoscopys endascopes and a pill camera to confirm the diagnosis turns out I never had crohns or any other desease what I ha was a botched bowel surgery and to cover up his mistakes he told me and my family that I have crohns desease and would suffer for the rest of my life with the affects .So I was given this drugfor a desease I didn’t have now I’m having liver failure and a host of other prblems that doctors at the university of salt lake city can’t figure out why.I do know this the dr, that was giving the infusions was charging medicare 4600.00 bucks for every infusion.

  82. I am on Remicade but after reading all these comments I will no longer take this medication. I am taking it for rheumatoid arthritis and only had 2 infusions, I am due for a 3rd next week after a month and I am going to call the doctor and cancel it. I am now scared to death to take any more and feel no results anyway and certainly do not want any of the side effects.

  83. To Lilly,
    Very smart move…if reading all of our comments can get the word out and reach an innocent victim then it was worth it. Thank god you are getting off of the drug. If you read my previous comments-the side affects were felt after the 3rd infusion.

  84. Lilly,
    GET OFF the Remicade, I can’t really tell you anything that all the post prior to mine has not already told you. I experienced all the joint pain , it seemed to migrate from one joint to another, jaw, neck, shoulders, even had a few days where I could not walk, very scary medicine. I ended up with Avascular Necrosis (AVN) and had both my hips replaced at the age of 41. Even after the hip replacement there is not a day goes by that I do not suffer from joint pain, usually ankles , wrist and shoulders. I can not believe that there is nothing we can do, so many people have had their lives ruined or drastically changed by this medicine. We need a class action lawsuit, but finding an attorney that will help us would be a feat in itself.

  85. Bryan,
    No one will take the lawsuit…I have checked..For some unknown reason they are protecting Centocor (makers of Remicade).
    I still get joint pain to this day after being off the drug since Feb 2010…and didn’t experience any joint pain prior to going on the drug protocol but I am glad that I got off and had the foresight when I did.

  86. i have been on remicade since it first came out for my R/A. I have complained all along that my front teeth will ache from time to time while on it over the years. The ache goes away eventually but it hurts and it is bothersome. Interesting thing now is I have had root canals in three of my front teeth in the past year. You cant tell me its not the Remicade.
    I also have chronic bladder infections. Last year I had 14 separate infections, so far in jan of 2011 i have had two this month. So I will be talking to my doctor this coming week regarding these side effects and whatelse i could take that doesnt damage my liver. Anyone else plagued with aching teeth and chronic bladder infections?

  87. my mom has been off remacaid for 2 years but was on it for 10 or more years she was just diag. with larges granular lymphocytic leukemia and there is no cure its one of the side effects from this drug we live day to day now shes only 63 im 44 I need my mother shame on remacaid and there makers pls I am on board for a class action lawsuit they need to pick up the bills for all that u all and my mother has to pay for o and by the way my mother has no insurance pls if anyone knows anything let me know you all are in my prayers pls keep my mother in yours ty for reading and sharing your storys may God Bless you all

  88. I am 37 years old and have taken Remicade for a year now. At the drug was a wnoder drug, I felt so much better and felt I had my life back. After 6 months on the drug, started having weird bumps and rashes, to one infection after another. Four the last 4 months, I have suffered the worst musccle pains and swelling in the muscles. I have been to my Rhemulatologist and complained, instead he moved me from 8 weeks to 6 weeks. Once he started treati;ng me every 6 weeks, my life has been horrible, I hurt so bad in my joints and muscles. I get the worst knots in my muscles and can’t hardly walk. I feel every ball joint on my body is too tender to touch. I am due for another treatment in February and have decided to stop taking this drup. It is ruining my life and I am convinced that all my problems are rooted to this drup. Throat muscles hurt all the time, the list goes on and on. I am very frustrated and wondering where to go to for help. I have no idea how long I will suffer these nasty side effects, but I do know this drug is no wonder drug after so many treatments. If anyone is reading this and may start taking this drug, I highly recommend not taking it. It will only make life hell for you.

  89. My mother is lying in an I.C.U.. with “lupus” and a severe lung infection right now due to remicaid. She cannot breathe and is on loads of oxygen and yet is not able to even talk. She is very close to death from this drug. Do NOT take remicaid!! She has has had stroke like symptoms since being admitted to I.C.U. which could be due to very low oxygen or swelling of her vascular system *lupus* and I am certain beyond a doubt this is all because of the remicaid. If she dies from this drug I will sue the doctor who gave it to her without proper warning of what might happen AND the drug company.

  90. I started Remicaid in early 2008. My doctor reassured me that the chances of my developing cancer were rare. I was concerned because all 3 of the biological had the same side effects. The problem with this drug is that it does make your RA pain go away. I was 3 weeks late with one infusion once because of a cold and by the 3rd week all my joints were inflamed. I found out in June of 2009 that I’d developed breast cancer out of the blue. There was no family history and in 2008 when I had my mammogram everything was great. My cancer spread pretty fast into Stage IV. I had the lumpectomy, etc and the thought from my primary doctor and the 2nd opinion doc was that they were not sure that Remicaid actually caused the cancer but they were positive that because of the Remicaid it spread like wildfire and that it should not have happened the way that it did. I’m currently in talks with lawyers about it but if anyone out there reads this, BEWARE…DO NOT TAKE THIS DRUG FOR ANY REASON. There are 5 drugs in the biological family and ALL OF THEM CAUSE CANCER. What are the drug companies doing these days creating drugs that might fix one thing but kill you also.

  91. My wifes Dr. has prescribed Remicade treatment for her Crohns disease. She has been dealing w/ it since 1985 when she had an Ileostomy due to her disease. She was diagnosed w/ Osteonecrosis due to Prednisone tratment back in the 80s. She’s 45 now and we are both scared to death about the side affects. She has always fallen into the 1% catagory of people who have the severe or unusual side affects of the drugs she takes. I’m so scared for her but there doesn’t seem to be any other options. Are there any suggestions anyone has for us. We are desperate for relief….

  92. My mother took Remicade for Chrons and developed a rare cancer (only 5 cases reported each year) the second they found out she was on Remicade they stoipped it. Unfortunately it was stage 4 too late, they operated but the cancer came right back in 3 weeks and she died. Upon further research I learned that the majority of people who contacted the cancers were Chron’s patients. They have known Remicade kills and still they put allow people to die anyway. It’s basically a trade off, either deal with the Chrons and be miserable or feel better for 5 or 6 years then get CANCER. ANY DOCTOR WHO CAN SAY IT “IT’S RARE TO GET CANCER DOESN;T DESERVE TO BE A DR.” They are not God and remicade does kill. I want to help get this product off the sheves they need to find other options, 57,000 people a year die from prescription drugs…

  93. Remicade filled me with infection, gave me a heart attack and I was put on life support for 3 weeks and giving a 10% chance to live. I was one of the lucky ones, yet I still suffer from the illkness. I weighted 225 lbs when the remicade got me and 160 lbs when I was wheeled out after a 43 day stay in the hospital. I had a lawyer call and take my case and after two and a half years he gave up. I quess my life is not worth shit to those bunch oh SOBs at Johnson and Johnson.

  94. I was on Remicade. With all of these medical issues, why is there no lawsuit against Remicade. Please I would love to talk to some of you. Maybe just maybe we can all get together and file a Class action lawsuite against this terrible drug.. One person they will not listen to, but a Village of people, Johnson & Johnson will have no choice

  95. My son aged 7 passed away last March after suffering severe brain damage. He was on Remicade to treat his Uveitis and when he got chicken pox it took his life as this drug severely lowers the immune system and the doctors could not save him.

    My wife and I are now investigating what could have been done to prevent his death and why did doctors have no clue as to how to treat a case like this, which according to them, is the first patient that was been treated with Remicade and died after getting chicken pox.

    My son was a completely healthy and normal kid. He only developed Uveitis over a year back and was almost healed thanks to this “miracle drug”. However, though I am sure Remicade has its benefits, when a drug takes lives, no matter what the profits, it should be investigated and the public should have full disclosure of all the risks involved.

  96. My husband took 3 doses of Remicade in 2004. His platelet count was zero and he was put on prednisone his whole blood count was low. The doctors kept “adjusting” his prednisone but it did no good. He died of intestinal blockage ( he had chrons disease ) in January of 2005 for which he had several surgeries. PLEASE do not take this drug, it is bad business.!!!

  97. I am reading your posts & can’t stop crying! I was misdaignosed with RA & was taking remicade & methotrexiate. I became so ill and was finally disgnosed with a rare small intestinal caner that has destroyed my life. I can’t work anymore & I am in pain everyday. The makers of this drug must be made to pay for so many lives they have destroyed. PLEASE stop taking this drug before you get cancer like me (no family history) I also had positive ANA, nodules in my lungs, joint pain, stomach pain, brusitis in hip on side given injections and damage to spine and neck!!

  98. I was put on Remicade about 7 years ago. I thought i found the answer to my arthritis. I am 67 years old now. This past March 2011 I had one stroke which put me in the hospital and two more while I was there. I need to be semi-retired now because I can no longer do the work. I have been sickened by Humira and Embril since then. I wonder if there is a drug that can help and not harm. I do not think Predisenone is the answer. I have great pain, fevers, and sweating.

  99. My Crohn’s disese recently flared. I was so desperate I went online looking for answers. I found “Breaking the Vicious Cycle” author Elaine Gotschall on Youtube describing the anguish her 8 year old daughter had experienced with the disease. Her quest to help her child is amazing. Worth checking out. In my desperation I tried the diet and it worked for me. Also, an Australian doctor, Thomas Borody has had impressive success with a three antibiotic cocktail to kill mycobacterium avium paratuberculosis he says, along with other experts, causes Crohn’s My doctors want me to begin Remicade. I will not consider it since reading your posts. Thanks a million.

  100. My son is 18. He was diagnoised with Chrons about 3 months ago. He just started Predinsone this past weekend and the doctor wants him to start Remicade in three weeks. After reading these comments today. There is NO WAY we will ever get on this medicine. We will take our chances with a strict diet. There may be discomfort but at least he will be able to live without all of the pain caused by Remicade. Thanks so much for having the courage to post your stories. It may have just save my childs life.

  101. hi my 3yr olds doctors wanna start her on Remicade.but after seeing all this im stuck..im so scared cause nothhing els is working..

  102. My mother took remicade for a time . At first they said she developed bladder cancer. Then they decided it wasn’t. Her bladder was so far gone from the treatments of remicade she had to have it removed.

  103. My fiance was diagnosed with Chrohn’s in 2001. Last year he was started on Humira injections for not quite 2 weeks he developed Pleuresy, muscle weakness and pnemonia. Right after he had to have a major colonectomy surgery. He only has 1and 1/2 foot of colon left now. He develpoed shingles as well right after that surgery. He did decently with a few issues for a few months then it became active again. They told us no other choices but a colostomy or remicade since none of the meds were working that he had tried. They said even if the remicade would slow it down. So we reluctently sid okay. In April he started remicade infusions 2 weeks then 4 then most recently 8 weeks apart. At this momen he is lying in the hospital with an underlying Ghrohns flare, C diff and now c diff colitis, and Shingles on his forehead, fluid on the left side and a pleuritic epeusion which is bad but not the least of his problems. At this moment he has received 4 units of blood in two day appearntly from bleeding in his stool his hemoglobin dropped but now they are unsure because it tests negative. We are hoping it doesn’t keep dropping. And they are testing now for meningitis, enciphilitis, fungal infections, listeria, hystoplasmosis and about 12 other diseases and infections. He is having shakes where his body just trembles and quakes while he can not control it. Then chills and cold spells before high high fevers which have had to have the limit of tylenol and ib profen with him not able to have more becasue it could be toxic. Then after the fevers severe sweats to oak him and the bed and clothes repeatedly before gagging naseau and vomitting that 3 sets of doctors teams of doctors at WVU have not been able to figure out the cause yet. This has been ongoing since Wednesday last week. They have internal medicine the gi department and now infectious disease scratching there heads. I am afraid more terrified he may not come home this time. We have a 12 year old and a nine year old. They need there father and I would never wish to see anyone suffer like this. I would not advise anyone to take these TNF blockers without thought to what may come later.

  104. I forgot he also has a stiff sore neck and a sore throat now along with joint pain in every part of his body.

  105. For Amanda above. The doctors pushed us to do Humira and then the remicade as well And the one doctor even commented to my Fiance that he started the humira injections today so even though his cat scans showed two places that needed surgery to take them for a few months becasue they were over a thousand dollars an injection. All I could think was he must be getting a kick back. My fiance ended up in the hospital with pleuresy pnemonia and muscle weakness and such severe pain from his chrohns that we were lucky the local hospital was tired of seeing him and pushed the surgeon to see him. When they opened him up it was like nothing shown on the scans or xrays they had to cut out over 25lbs and it was like cement was the surgeons words. He was left with 11/2 foot of colon. We desperately did not want to try remicade later that dr. decided not to see him anymore when he refused repeatedly. Then when he switched they pushed too telling us we had run out of options to try and slow down the chrohns. I would not take it because that same dr. also told another patient after 2 hours waiting to be seen that since he did not have insurance anymore even though they had the cash to pay for the visit that he was a professional and would not treat him. I believe most of the doctors are after the money and its rare to find one who is good or cares. Keep looking for one though and these TNF blockers cause more pain and suffering than the initial disease they are treating. My fiance is 38 and with everything he now has and what he has still unknown watching him shake and go through those episodes broke my heart. I couldn’t imagine suffering like that and don’t know how he hasn’t given up yet.

  106. I find these posts very interesting, but also very disturbing. I’ve been taking Remicade for 6 yrs now (for severe psoraisis) and have had absolutely no side effects, unlike all other drugs I tried before. To me, it’s been a miracle drug. However, I’ve developed problems breathing and a recent visit to my primary care doctor has resulted in him ordering a ct scan with a diagnosis of lung nodules. Found this site because I was curious if others had experienced this and I see some have, so I’ll pass that info on to him. Just wanted to say… don’t be too scared of the side effects. Regardless of the risks, it’s been a lifesaver for many people I’ve shared stories with while we were receiving infusions. Like anything else, it can be a blessing for some… a curse for others. God bless you all… and let’s keep hoping for a cure for these auto-immune disorders.

  107. For Linda,
    Well you happen to be one of the lucky ones thus far.
    Read my posts back in April and March of last year.
    I went on for psoriasis as well but thankfully I am not that bad. The remicade did clear me up however I came down with severe joint pain and drug induced Lupus.
    I have been off the drug for almost 2 years-thankfully.
    Continue good luck to you and hope they find a cure for psoriasis and the other auto immune diseases.

  108. My wife was first diagnosed with spondyloarthropay and her rheuma prescribed hede.r with Enbral and then Remictad. My wife immediatly after her first injection started with some neurological symptoms along with many other. She started having severe muscle contractions, unable to walk with rigity. frequent episods of attacks, both legs and arms with stonge unvolentary spasm. I had to take her to John Hopkins and Mayo clinic to neurologists. They said her sypmtoms are not due to Remicade but i dont believe so . Is there anyone with these side effects due to remicade or enbral.
    These symptoms are disabling me and my wife.

  109. After reading all of the above posts I am convinced that I should not
    even begin a course of treatment with Remicade! As with any drug,
    if the side effects out weigh the benefit(s)…it should not even be
    considered viable!

  110. I was on remicade until I had an allergic reaction. It had no benifits for my crohns. My vision got terrible. Last week I was diagnosed with severe cataracts and scheduled for surgery. I am 59 years old.

  111. My mother had rheumatoid arthritis. She started Remecaid treatments in 2009. She had lived in the Mississippi River Valley and so I am not sure why the doc suggested this drug to her. Sometimes she said she felt a lot better. We *her children* actually asked her not to take it because she had so many side effects and within a year it wasn’t giving the best relief anymore. She had lots of infections on this drug. She was sick all the time and weak as a kitten. She had moved to Oklahoma some years prior to starting the drug.

    One week she got a lung infection which she thought was just “bronchitis” My brother in law insisted she go to the hospital after which she said “Okay, but they won’t keep me.” They did. She was in ICU within hours. No antibiotic was working to clear up the infection and she had a TIA while in the hospital. The one doctor wanted to test for histoplasmosis but, by that time she was so sick in ICU she began asking to go home on hospice.

    My mother died within two weeks of first being taken to the hospital. On January 15th of 2011 she was fine and by Feb. 10 she had died. She got histoplasmosis from taking Remecaid. Do NOT take this drug. It kills people and certain physicians are pushing it as a cure all for autoimmune diseases. It’s not. Two weeks after my mothers death I was diagnosed with Rheumatoid arthritis. I will never take this “miracle drug” If not for that drug, my mother would be alive today.

    No one who has ever lived in the Mississippi River Valley should be on this. No doctor should EVER have administered it.

  112. My mother had rheumatoid arthritis. She started Remecaid infusion treatments in 2008. She had lived in Chicago, Illinois, and received treatments from a facility name MIDC Laboratory in Crestwood, Illinois. She started slowly wasting away, each visit to doctor we told them that she wasn’t eating and her memory was going, but they said it was due to her age. My mother was only 78 and was very bright and alert before her treatments. She became very sick and we took her to the emergency room November 6, 2009, told us she had cancer. This was very hard on us, we couldn’t believe it because there was any history of cancer in our family. My mother died November 14, 2009 of pancreatic cancer. I started looking researching, I needed to know what possibly caused her to have cancer. I looked up all the medication she was taking, all the foods etc., and then as plain as day REMICADE. The I needed to know why the FDA hasn’t taken it off the market, Europe has forbidden it! How many people has to died before it is removed ! Did you know that most of the facility administer this drug without a doctor being present, nurses are the ones who administer this drug. If there was a doctor there and her vitals where being taken correctly, then they should have detected something was terrible wrong before it went to far. We need to fight to get this drug removed in the US

  113. I think everyone who is taking this drug need to read the email below I just recieved for the FDA, I X out my last name.

    — On Mon, 1/30/12, OC OSHI Internet Mail wrote

    From: OC OSHI Internet Mail
    Subject: RE: Remicade
    To: “‘Regina XXXX”>

    Date: Monday, January 30, 2012, 3:02 PM

    Hello–

    I’m sorry to learn of your loss.

    Remicade is indeed a dangerous drug. See http://dailymed.nlm.nih.gov/dailymed/lookup.cfm?setid=a0a046c1-056d-45a9-bfd9-13b47c24f257 This drug offers a combination of benefits and risks that many patients find acceptable, but there are clearly individual cases where the risks exceed the benefits. If you are aware of advertisements, promotional materials, or other activities by the manufacturer that you consider unlawful, I welcome you to share that information with me and I will forward it to the appropriate FDA enforcement office.

    Again, my condolences.

    David Banks
    FDA Office of Special Health Issues

  114. My father was given Remicade for his Rhumatoid Arthrits 5 years ago. He is now in the final stage Alzehimers with Dementia at the age of 63. The doctors believe that it was brought on by the Remicade. I am looking for others who have developed Dementia because of this drug.

  115. I was on Remicade for approx. 4yrs for chrons disease, although I got relief from the disease, I was down at least 4 days after the infusion, tired,weak and just generally not feeling well. I would then get Infections from respitory to sepsis urinary infections to having MRSA. There is not much hope from getting away from these types of drugs it seems that it is all that is avalible for us that have tried everything else.

  116. Kelly,
    I’m sorry about your father and really sorry you didn’t about the deadly side effects of this drug. That why I’ve been trying so hard to get the word out to people and let them know that is drug is very dangerous and I know it the only drug out there for certain diseases, but it will kill you in the end.

    Sharon,
    As I stated above this is a very dangerous drug, please, please discontinue it’s use and try to find something else. Yes, I know we all have to leave this world some day, but why rush.

  117. I am 31 and was dx with Crohn’s Disease a little over 2 yrs ago. Many meds didn’t work and 6MP came to a toxic level in my body so I was taken off of it. Remicaide was one of my last choices, and it does appear to be a miracle drug, as I can eat and live pain free and sleep at night and do activities again, but reading these comments scare me. I get Remicaide every 3 weeks because my Crohns is so bad, but having infusions this regularly scares me. I have only had 6 infusions so far and am starting to have bad skin problems that Ive never had before but no other side effects. Did anyone else get bad skin problems? Also, was anyone else getting infusions every 3 wks, because it seems like a bit much to me nd makes me nervous.

  118. Hi my name is Lori and I have had arthritis since 1996 and has spread to all my joints. It took several years for the doctors to diagnose me, so from going untreated for a while I lost 80% of mobility in my joints and developed some deformities in my fingers and elbows. The doctors explained to me my problems would not get any better as far as my range of motion and deformities but medicine would keep it from worstening. After trying Humira, Embrel and others, I was put on remicade in 2005/2006 and it seemed to work the best for me. I have been receiving the remicade treatments since then until recently. I was unhappy with my current rheumatologist, because my appointment every 6 months would last no longer than 5 minutes and I was afraid my body wasn’t being monitored close enough. For the last year and a half I had been getting dry patches on my elbows and they would go away once I got my infusion, the doctor told me it was psoriasis which was normal with arthritis patients. When I transferred to my new doctor, I missed my infusion, I was ready to just start over and do what a new doctor recommended, while waiting on getting into see the new doctor I started getting a rash with blisters on my hands and they hurt and swelled and itched, almost looks like I was severly burned now. My new doctor sent me to a dermatologist who told me it looked like the remicade had caused me to get the Psoriatic arthritis/psoriasis. I told him I thought that was part of arthritis and he said it is common, but signs that the disease is induced by the medicine is when the spots are on the palm of hand and foot. It has been a month now and I have spots on my palms of my hands, outside of hands, between finers, up my arms, crease of elbows, back of elbows, stomache, legs, ankles, scalp, it has spread everything and is very devestating. I am 28 years old and have dealt with the looks of my deformities, how I walk, sit, etc and have coped and lived with it and have tried to keep confidence and my head up. Now this medicine I have been taking to prevent these things from getting worst has caused another type of arthritis and is ruining my skin. I am terrified to try a new medicine with fears of what it may cause next, I am terrified not to be on medication, I dont want to be a vegetable! Not only are these spots hideous, but are painful, making it hard to walk and work! I work in a prison and I am scared of infections I could get on my hands since it is raw skin. Has this happened to anyone, sorry just vented!!!!

  119. I was put on Remicade over 12 years ago for Chrons and rheumatiode arthritis . My story is very similar to Lori’s dated March 29.2012. I would love just to talk to her. Would you please be good enough to forward to information on to her. Thank you. Tina

  120. This is to Regina. I am truly sorry to hear about your mother. Let me tell you my story. In December of 2000 I went to the emergency room thinking that I had, somehow, broken my left hand. It was horribly swollen. Xrays confirmed there was no break and I was told to just ice it and sent home.
    On the follow up with my primary doctor he referred me to an orthopedic surgeon. After 4 months of physical therapy with no relief I decided to hit the web for an answer. It did not take long to deterimine I was suffering from Psoriatic Arthritis which was described as a very aggressive form of Arthritis.
    I immediately contacted my doctor and he referred me to a rhuemetologist who confirmed my self diagnosis.
    He suggested I go on Remicade treatments paired with methotrexate,
    My first Remicade treatment was in August of 2001 and the results were amazing. At the time, my only side effect was extreme fatigue immediately following the infusion.
    In December of 2002 I contracted “walking” Pnuemonia and in May of 2003 a CT scan was taken as a follow up to make sure my lungs were clear. In that scan a tumor was found in my pancreas which was confirmed via MRI and Nuclear scans later. I had surgery to remove the tumor along with most of my pancreas and my spleen. I had a post op infection that almost killled me and was hospitalized for 13 additional weeks and put on an IV antibiotic regimen that lasted an additional two months. I eventually had to have a second surgery to remove the infected “debris”. After a marginal recovery, I was placed back on remicade and continued until I contracted a MRSA infection in 2009 and was rushed into emergency surgery. As a result of that infection I was told I could no longer have Remicade treatments and our treatment focus will be switched to pain management.
    Through a friend, my wife found an anti fungal diet that was said to help Arthritis sufferers. We began that diet in August of 2009 and I am pleased to tell you that I feel better now than I did while taking the infusions. It wasn’t until I read your post that I began to realize the connection between Remicade and the cancer. I am very blessed. That tumor was discovered very early and while the suggeston of cause and effect is strong, I have no doubt about the drugs role in the post op infection.

  121. Well had a full body rash head to toe following last remicade infusion. It was awful. Took over a month to get rid of and had to go on steroids. I can never take remicade again and never will
    it literally ruined my skin. Wondering what drug others found successful after discontinuing remicade for their crohns.

  122. I am so sorry for each and every one of your losses. Today, my doctor convinced me to start Remicade!!! Waiting on Insurance to Ok it. I am a 49 year old mother of 4 boys about to become Grandma for the first time and I have R.A. but after reading all this, I am totally horrified!!!! I also had a heart attack at 38 so cardiac issues follow me. Guess one has to just live with this terrible pain. Very Depressing to say the least. I’m so sad for all your problems that this drug has caused you on top of your original diagnose. Yet, they keep pushing it!!!

  123. Johanne, you don’t have to live with the pain. When my rhuematololgist wanted to switch from treating the disease to pain management, we sought different treatment. We have been on an antifungal diet for three years and I am in better shape than I ever was during the remicade treatments. Check out knowthecause.com
    I am a walking poster child for that program.
    I have occaisional aches and pains from my joints but it is very minimal compared to what I was suffering when first diagnosed.
    My insulin usage (remember I no longer have all of my pancreas) has been reduced by half. Before the diet, I was taking 80mg of Vitorin per day for high clorestoral. I now take 80mg per week. Even my eyesight has improved (as of my last eye exam) I dropped 40 lbs in the first year and have been at a plateu since.
    The amazing part is there are no cravings. I highly recommend to anyone suffering from any auto immune disease. It is, at least, worth investigating.

  124. I was on Remicadefor 6 months and start haveing a flu like probles in april 21 day of my birthday .my dr sent me to the ERthey sent me to a room around 6am by 12 that night i was in ICUfighting for my life come to find out start Remicade shut my body down i got the CMV vires becuase of the drug I not have lung damge and am on oxgen for the rest of my life I am sick all the time have never been sick like this until i started on start Remicade .i have five grandbabys and can not even go out to play with them nore travil to see my outher grankids like i use to becuase of being on mahines and oxgen .this past mouth of may i was told the CMV has spred more on the lungs this vires is cuased from the drug i ask that please we all need to take a stand with these drug companys becuase they are killing us by not telling us the full truth about this drug and how it killing and has put so much suffring on people and there familys I wish I could have my life back but its all done cant rever the troble that the drug company had done to me and everyone else i ment to tell you all becuase of the drug i had they had to go in and remove my gal blader and open up the duch glan becuase of the drug cuaseing MY BODY TO compley shut down and getting this vires from the public .when i was in ICUI was there for 48day fighting for my life they told my family I had only 3 weeks to live not if the vires comes active again the drs said it will kill me . thank you Centocor and Johnson & Johnson for giveing my a short time to live my life

  125. I HAVE HAD CHRONES SINCE 1976 AND HAVE BEEN ON PREDNISONE MAINTENANCE DOSE OF 15MG PER DAY AND DEVELOPED A VERY BAD CASE OF PSORISIS. WENT TO HOPKINS AND RECEIVED NARROW BAND LIGHT THERAPY TREATMENT . 1ST YEAR 3XPER WEEK FOR ABT 6 MOS SKIN CLEARED. THEN TRIED SOME KIND OF A GUN THAT PENETRATED THE SKIN–WHAT A RIP. WENT BACK TO NARROW BAND LIGHT THERAPY SKIN REMAINS CLEAR FROM ABT MAY TO OCT THEN GO BACK TO NARROW BAND 1-2 TIMES A WEEK FOR BALANCE OF YEAR

  126. I’ve been taking Remicade since 2001 for my RA, every 6 weeks with methyltrexate 7.5 mg a week. I’ve had the best rheumatologist, who took blood labs religiously and chest x rays and mammography’s to be sure everything was clear of infections. I started taking this drug before the warnings on anything came out – only infections were common.
    This May, I was diagnosed with a very, very rare form of lymphoma – tied expressly to Remicade; it’s still quite mild and not of an immediate concern. I was also diagnosed at the same time with a small cancerous lung nodule, which has rapidly spread since it’s discovery in May, and is now at stage 3. My lung cancer doc (specialist at a large research university) states this is a direct result of my Remicade also. I have 2 cancers from Remicade.

    I may die from using Remicade.

    DO NOT USE THIS MEDICATION!

    If you know anyone who is using it – please tell them to stop – now!

    No one ever mentioned anything like this ever possibly happening – the literature when I started did not have this in it. I did have a MRSA and 2 cellulitus infections a few years ago also.

    The Remicade stopped my RA so well, it was like a dream.

    Now I am living a true nightmare of wondering if I am going to make it or not.

    I am now 54 years old.

    Don’t take this stuff – don’t be seduced.

  127. I have been under treatment in INDIA for presence of HLA-B27 (+) ; low blood count at 2800 and TB. Doctors have prescribed me for Biologic treatment . Infliximab Remicade as well as bone marrow biopsy.My 3 rd dose of infliximab remicade becomes dues on 8.7.12 but there is no improvement. Continuous deterioration with huge pain. Kindly let me know whether I will recover with this. Doctors here mention that it is not curable.This is a nuisance disease and puzzles all. Treatment is lifelong and very expensive.
    kindly let me know whether this cures Spondyloarthotities and how to avail the same. There is also eye corneal damage to occur with ankylosing spondylitis although it is not unusual for there to be inflammation in the front of the eye known as iritis. I am told that this would generally recover with Infliximab. Infliximab remicade is so far not effective. Doctor mentions that after 15 sessions ( so far only 2) this will be arrested but not curable.However, it is not a cure and if the Infliximab is withdrawn it is very likely that the symptoms will return. Lifelong (and expensive) treatment is therefore a MUST. Medical fraternity is reportedly await the developments of new treatments that will truly be curative. I have been in touch with America + Boston + Oxford + Netharland based Johnson Co BUT NO HOPE SO FAR. I am tolf to opt for spiritual life and it is Almighty to address the inner call. I am frustrated. Doctors mentions about suicidal attempt ; hence be cautious. I can not digest any meal except liquid.

  128. I was put on Remicade in 2008. Within 5 infusions, I was in a full blown allergic reaction. I now have Autoimmune Hepatitis (my ALT got to 331) listed by my doctor as caused by Remicade. I developed serum sickness, RA, and other such illnesses. This drug is a nightmare!!! I hope the makers of this sleep well at night, as I have shortened my life by using your product!!!

  129. did you know that the makers of Remicade settled a 19.4 million dollar lawsuit about 2 years ago with a woman in Texas for lupus due to Remicade? I have asked as well, no on will touch the case…

  130. im hearing of remicade and humira well heres another one a new one please dont take this one either cimzia is the name, ya wow it worked so good crohns was great from june 08 to dec of 08 then at christmas i had an ejection fraction of 12% that is what my heart was working i did quit but since then have not been able to work, single mom loosing our home, got a crt-d put in (form of pacemaker) my legs hurt so bad i cant hardly walk my eyes have really got bad. right now my chest hurts like bronchitis its just never ending. i took remigade first in 2002 , ive had 36inches of small bowl removed. im hoping there is a law suit out there i would love nothing more then to enjoy my kids right now before i cant do anything. im really about to give up, my kids are 15,14,and 7. im 45 single ive read your stories this is just not rite all of us had to go threw this im so sorry for everyone i know some of what your going threw. god bless all of you. any comment of how to keep optimistic anymore would be well apreciated

  131. hi my daughter is 12 and was put on remicade after her first infusion her heart hurt so bad and then 4 days later had diarrah so bad 25 times a day , dr said it was not remicade , but a viris when she had her 2nd infusion exact thing happened but it started the same night she got the infusion! by the 3 rd day her knee was in bad pain we went to er the dr said it was a reaction to the remicade ,its been over a week since her 2nd infusion and she is still having terrable diarrah . She will not be getting any more treatments ! Thank you all for sharing your stories. Does anyone know how long it will stay in her system?

  132. I was on remicade for chrohns and was diagnosed with stage 4 lymphoma in 2009. Under went 7 months of chemo. I am in remission for 3 years. I refuse to take anything for this disease on a daily basis. I have just learned to deal with it on my own for now. Stay away from remicade

  133. I WAS ON REMICADE AND EVERY TIME I HAD TREATMENT I WAS SICK FOR A FEW DAYS. THEY GAVE IT TO ME EVEN WITH A LOW GRADE FEVER,,,,,I WAS REALLY SICK AND ALMOST PASSED OUT 1 TIME THEN IUVTH I WAS ON REMICADE AND EVERY TIME I HAD TREATMENT I WAS SICK FOR A FEW DAYS. THEY GAVE IT TO ME EVEN WITH A LOW GRADE FEVER,,,,,I WAS REALLY SICK AND ALMOST PASSED OUT 1 TIME. THEN I WEEKEND I HAD TO BE CARRIED IN MY HOME COULD NOT STAND.ALSO HAD GI BLEED . AFTER PAYING OUT OF POCKET FOR TREATMENTS THEY SAID I HAD A ALLERGY TO REMICAID

  134. I am a 49 year old male from Canada. I have had a variety of medical issues for over 20 years. I recently started treatments of remicade for ankylosing spondilytis, and shortly after the fourth treatment I began to experience blurred vision, fatigue, numbness and loss of strength and motor skills. Currently, I have almost no use of my left hand, and am starting to lose the use of my right hand. I have researched this drug and all I can say is….do not allow anyone to talk you into having it administered. I am wondering if there is any litigation that is occuring in canada.

  135. I have been getting Remicade infusions regularly for 12 years for Crohns. During that time my quality of life improved and flair ups and hospitalizations significantly decreased. Now I have peripheral neuropathy. My Gastroenterologist continues to insist that this is not related to Crohns nor Remicade. I don’t believe him. Anyone else out there with peripheral neuropathy???

  136. Even after 3 sessions of remicade, there is no improvement. It is progressing fast thru’ my left leg . Cornea is almost dried up. Monthly medicine costs Rs.3500/- besides costly remicade. Next session becomes due in Jan’13 and it is to be continued all thru’ my life. Any idea.
    Regards,
    Jayanta
    India
    07.11.2012

  137. I was diagnosed with Crohns disease in Feb 1997 after a small bowel blockage was discovered and parts of my small intestine and illium were removed surgically. I had some success with pentasa, an oral med, but still had occassional severve cramping resulting sometimes in overnight hospitalizations. Remicaid was introduced in around 1999 or 2000, after I began developing fistulas. The remicaid has kept my Chrohns in remission and my fistulas mostly at bay. In August 2010 (I was 45 yo) .I was diagnosed with stage 2 throat cancer. I underwent 7 weeks of radiation, still kept up with my remicaid treatments, and my cancer was in remission almost 2 years. Then, out of the blue, I developed two new cancerous tumors in my right lung. We had them surgically removed in June 2012. All looked good until Sept…a Cat scan showed two new tumors, same lung, different locations, along with some mucky stuff that looked like tapioca pudding. The cancer more than doubled in size in the two weeks it took to get the pet scan and start chemotherapy. They are telling me the chemo isn’t going to be curative, but it may open up some choices if it works. My oncologist says not to bother quitting remicaid b/c it has already done its damage. My primary care Dr says he is pretty sure the remicaid caused the cancer, b/ c of my age, lack of cancer history In the family, etc. So now I have to decide if I should get my next remicaid, scheduled for next week. After reading the posts, I am thinking I should cancel. But, when I reduced my dose this summer, I developed severe arthritis and my fistulas started going crazy. I wish there was some other “safe” medication that would control the fistulas…any words of wisdom out there?

  138. I am 33 years old and started taking Remicade for my Ulcerative Colitis about 4-5 years ago. I waited too long to be diagnosed, as I believe most men will do, until I was literally wasting away, afraid to eat anything or go anywhere, always looking for the nearest bathroom whenever I left the house. I was severely depressed do to all of this and am so fortunate my wife (girlfriend at the time) stood by/supported me through the whole process. After being diagnosed with UC, I was put on steroids to handle the flare-up, which worked great/I felt SO much better while on them. However, once I tapered off the steroids, my symptoms came back within days. I was on Colozal (3 pills 3 times a day) then they tried other drups including the 6MP which literally almost killed me. Finally/last ditch effort, Remicade was recommended. It took 3-5 infusions before I started feeling positive effects but, once I did, I was able to push it out to only getting an infusion once every 12 weeks. I tried stopping it and within 1-2 weeks past the 12 week point, I had another flare up/had to start the whole process over again. I’m afraid there is no way of predicting/knowing one thing causes another pertaining to Remicade and other issues people are mentioning. You, as an individual, have to decide if your way of life is so awful (as mine was) that it’s worth the risk of trying Remicade. Knock on wood, i’m been perfectly fine the entire time i’ve been on it, no side effects what so ever during or after infusions though I will say I DRASTICALLY changed my diet and now eat a lot of chicken/fish, fruits, veggies, and have found cutting out DAIRY products drastically helped me and others I have talked to. Adults have no medical reason for ingesting dairy products so it’s easy to go to soy/almond milk/cheeses, etc…I only post this so someone can see a rare positive experience from someone on remicade.

  139. I HAVE BEEN ON REMICADE; I WAS SICK EVERY TIME , ONCE WHILE TAKING TREATMENT WITH FEVER (OK’D BY DOCTOR) I ALMOST PASS OUT AND NURSE DID NOT SEEM TO CONCERN…NO DOCTOR AVAILABLE WHEN TREATMENT WAS GIVEN….I WILL NEVER TAKE REMICADE AGAIN….PLUS I HAD TO PAY OUT OF POCKET…..

    LOT MORE TO MY STORY….BUT AS I SAID SICK EVERY TIME….

  140. The stories are very heartwretching, but not all TNF users have such drastic issues. I was diagnosed with RA at 19. By 24 was unable to use my hands most of the day despite prednisone and methotrexate. By 28 had severe autoimmune hearing loss which became worse with each flare until I became deaf at 35. I could barely get out of bed, use my hands or care for my children. I am 47 now and thank God every day for TNFs. I have five children, work full time as a pediatric cardiology specialist and run half marathons. I went from using crutches daily to running marathons when TNFs became available 13 years ago. The ongoing pain and damage from severe RA would have killed me long ago. Although I truly sympathize with all for their unfortunate responses to TNFs, I believe it is an ongoing search by drug companies to do no harm. I would not go back to daily hell just to “protect” myself from possible, even lifethreatening side effects. If you are able to stop treatment and live with alternative meds that is wonderful and truly if that is the case i would seriously consider stopping…….but i had no life except constant pain. I will gladly enjoy my time with my children, my patients, and on my road…however long that is…without blaming the drug company should my life be shortened by side effects. the RA is the bad guy..not the drug company. If they are so afraid of law suits they will not continue to find better meds. Everyone wants someone to blame for their misfortune. It has to be someone’s fault. They didn’t give you RA or any other autoimmune disease. Our time and resources would be better spent focusing on this. When I started my first TNF med it was with eyes wide open. Possibly other providers are not making sure their patients truly have informed consent if they are surprised to be diagnosedwith rare cancers etc. That might lead me to legal issues with my provider, not the drug company. Indeed considering potential side effects providers need to be prescribing TNFs carefully. Blessings to all. This is a trying journey that allows us to rejoice in small accomplishments and push ourselves to the limit of our endurance. May they find better drugs with less side effects in our lifetimes. Autoimmunology is a huge challenge…I believe there are those researchers up to the challenge it presents.

  141. My mother was 58 years old and was diagnosed with Chrohns Disease back in February of 2012. Being that she had a severe case of Chrohns her doctor recommended Remicade. After her Third infusion she developed pnemonia and one lung was completly whited out. She was put on a ventilator and in the process developed turburculosis. She died July 21. BEWARE DO NOT GO ON REMICADE!!!! Our lives will never be the same. The doctor did not warn her of any side effects and unfortunately we did not do the research until it was to late.

  142. Hi, I got crohns the summer before grad school (applied physics). at then end of summer, remicade put the crohns into remission, and I decided to go to school. Just a few months later, I developed severe pain and nausea similar to what I had earlier. I was at school a few months before I had too leave, i was just too distracted. 2 years later im still on the remicade and the 15+ doctors Ive talked to since said the remicade could not be the cause of my symptoms. now I find this site, and apparently Im not alone. Thank you everyone for sharing your stories. Ive even had doctors throw me out pr scream at me or my parents, saying I couldn’t possibly be in pain. wow. I am currently on heavy pain medication as well, i am definetly going to look into stopping the remicade. Im just lucky I havent developed cancer yet.

  143. My LATE huisband was onl Remicaid for mild arthritis in 2003 for only about 8 months. During that tiume, a normally healthy man had numerous infections from pneumonia several times, ear infections, shingles,and many other things. I read info that it would block the immune system, so I made him go off of it. In Sep of 2004, he developed NON-HODGKINS LYMPHOMA. He had strong chemo for 4 months and the cancer was cured; however…he developed a severe lung infection that they could not find a bacterial cause for. I insisted they do a bronchoscopy to see if it was VIRAL…and guess what…he had a Herpes virus in his lungs ! It was cleared up with Acyclovir in about a week. Things went well for about a year and then he started having TIAs. Eventually he had a “silent heart attack” and had a stent put into the large artery in his heart. He did fairly well for about a year, and then started having more severe strokes. He finally had one that took his eyesight. He developed many blood clots and he died in April of 2011. Even though some of the conditions were a result of the Chemo…it was all directly or indirectly caused by Remicaid. PLEASE…don’t let your loved ones succumb to this drug ! If you or a loved pne took this drug…PLEASE report it to the FDA ASAP ! I did so… but was told by an attorney it had been more than 2 years and was too late to file a lawsuit.

  144. Hello to everyone. This is a followup to my previous post. After my fourth infusion treatment, I developed severe peripheral neuropathy. Two of the attending neurologists hinted that it was very possibly caused by remicade. The physician that prescribed this treatment told me that there is no way that remicade could ever cause any symptoms that I was describing, and that it was completely safe. His one-sided view may have something to do with the fact that he helped to develop this treatment. I argued the fact with him, and told him that there are a significant amount of case studies showing that this drug indeed does have many side effects, and that he should be warning his patients of the possible dangers. He and I had a heated argument for about twenty minutes, and he finally did relent, saying that if it was the cause of my neuropathy, then I should see improvement after my body flushed out the drug. This statement, to me, is a strong suggestion that he is indeed aware of the dangers of this drug. On a side note, I have argued with many of the doctors, and have come to realiize that they really hate when a patient knows what he is talking about. They really don’t like being corrected, especially by someone that has no formal medical training.
    I have since found a great deal of improvement in my strength and motor skills after stopping the infusion treatments. However, I have had a number of life threatening infections in my abdomen, and am currently battling another. I am not responding to the antibiotics and am probably going to have yet another abdominal surgery.
    So once again, I urge everyone to stop using this drug.

  145. I have crohns and took 4 doses of remicade after the third I got a rash all over my body. I also was having issues with my bladder/kidneys lots of back pain also ear infections. Hospitalized with the rash/pain and diagnosed with lots of different types of rashes. I had the 4th dose and the rash got way worse hands feet head etc just before my next dose I went to my doctor and requested an emergency dermatologist appointment. He said I had psoriasis most likely caused by remicade. It has been only 3 weeks since I was due for my last infusion i also am having issues with my ears and kidneys still too. I am also from Canada. Any suggestions on how to find out just what damage may have been caused by this drug?

  146. Warning, Warning, Please Read

    The attorneys are part of the nationwide scam. If you go back in your mind, the day the pain started, a week before you saw a doctor and the doctor injected you with the pain which is a virus. The doctors are changing your cells in your body. It is a DNA change, that is why you suffer such great pain. The nurses and the doctors, and your government is in on this research, including your employer. This is why you can’t get any help of pain relief. I was injected in Austin, TX. If you don’t know, Austin Texas has numerous colleges in that small city. The one that is well known is the University of Texas (UT). I could not believe the number of young people in Austin, TX that was injected by these wicked doctors that was in the same hospitals and blood lines that I was in suffering great pain between the ages of 17-20, I was 40 at the time. And every time I went to the hospital to get Remicade and blood tests, the numbers of young people kept growing and growing. I couldn’t believe what I saw. I knew if I stayed in Austin, I would die. I seen 21 surgeons and RAs, and not one doc was helping me, they were just taking insurance money. The numbers in the hospital kept growing with this disease. A friend of mine helped me to see a RA doc at the Baylor Medical Center in Dallas, TX. This RA doc removed 12 large cc vials of fluids from my bursa sacs, you must understand that this is impossible for I just had knee surgery. The doc in Austin, TX that performed the knee surgery saw all the fluids in my knees, but refuse to remove it because he wanted to kill me. And every RA doc, PA, Primary Doc, Orthopedic surgeons was trying to kill me as the insurance bills stacked up. I also was fired from my job of 21 yrs leaving with no medical which I had to pay out of my pocket to Cigna of $900/a month. Through the Grace of Yahweh, I survived. It is not Remicade that is your enemy, it is the wicked doctors and nurses. You were injected with this suffering so that the doctors with the pharmaceutical companies to take the insurance money and to play games with your life. It is a SCAM created by your government. You are a test creature to see if you can take the pain as Jesus Christ took the pain, or will you kill yourself. You see, death is easy, it is living that is very difficult. The SCAM is that you commit suicide cause the pain is freaking unbelievable! For everyday you wake up, you contemplate on committing suicide. The devil, who is the two snakes that wraps in the medical symbol is one with the government and you have become a test creature. So you probably need to stay in the house anyways and wait on Jesus, your GROOM, to come. If you pray and pray and pray, Yahweh and Jesus Christ, will take the pain away for at least a moment. This is a government conspiracy. They created this disease of viruses and injected into your bodies. They don’t have no age group or color. The doctors and nurses that you have learnt to trust because they took an oath, is now WICKED, and they are working with the government or the devil to take your soul through the relentless pain. Jesus took a whooping, so you take your whooping too. For all the signs that are written in the scriptures is here. Hold on for the GROOM, Jesus Christ. This is the reason that so many of the sufferings cannot find a good doctor or nurse, it is them that are doing what they are suppose to do, JACK YOU UP. Jack you up, Jack your children up, your wives, your mothers, your fathers, and all that you love. This is REAL, and this is a great conspiracy that the government, your doctors and nurses, and now your lawyers came up with. They are working in sync, and if you are considering a Class Action Lawsuit, you will get your check of $2.11 cents. And the attorneys will get millions that goes back to the doctors and nurses, the government, and the pharmaceutical companies. IT IS A GAME and we have been played like the plagues of the past. But this one is a more sophisticated game for they do not want you to die, they want you to suffer and blaspheme the Creator, YHWH Yahweh. For all that is suffering what I am suffering, you must pray every day cause every inch of your body hurts. Your toe nails, your finger nails, your hair, your ears, your eyes, your stomach, your jaws, every inch of your body hurts. Since the virus is in your cells, you gotta change the cells. How do you do this? It takes time, you can get Chinese herbs for inflammation…but it will take you years to see changes in your body. Massage and Acupuncture do work to ease the pain and your suffering. You must change your cells because they poisoned your cells. In order to get better, your whole DNA must be changed. Like the movies we see on TV, Wolverine and the X-Men, it is real…they jacked us up with a mutant cell created by the United States Government and injected into you by the doctors that you trusted and loved most of all. Which doctors did you trust and love the most, and that was the doctor who caused this mutant injection in your body. They picked you because they knew you trusted them and that you were clueless. Matter of fact, you went out of your way to be kind to this doctor, and this doctor saw these and that is how you were picked to be experimented on. And the doctor knew that you would never think it was he or she that injected you. This disease is created through intravenous needle use. So if you were a drug addict, you injected yourself. This painful disease traveled through a syringe before it got to your body. So the only way you can heal yourself is to not give up. To rub yourself with green alcohol, to fight to change the blood cells in your body, and do not think these doctors or nurses, your government, these attorneys give a DAMN about you, for this is their scam and you are just a puppet that suffers greatly every day. And the pain will not go away (Yahweh and Jesus Christ is the ANSWER and THEY are coming to save us). Remicade cost $17,000.00 for an infusion. If you think about everything you read in this comment, you know it is all the truth. The answer to healing is in the herbs of China, if you have the money…I would head towards Chinese Medicine. If you didn’t know it, China has 18,000 herbs growing in flowers during the monsoon season. China is the only nation that can kill this virus with their flowers and herbs. For China have 7,000 years of experience. The Western doctors are here to kill and to make them dead president’s faces so they can live their luxurious lifestyle, but I say…give them a SHOVEL for they are digging their ditch into the pits of HELL for YAHWEH AND JESUS CHRIST SEES ALL THAT THEY DO. You might think I am one of them bible thumpers, and if you believe that, then you are a fool. Cause I have the same pain you have, I have just survived REMICADE longer than most with the help of Eastern Modalities. So the words I speak is the HONEST TO GOD’S TRUTH. I would recommend fire cupping as much as possible to alleviate the pain along with massages and acupuncture. The fire cupping helps take out the virus through the pores (skin). The sad thing is the radiation from Japan is jacking up the flowers in China, which is the herbs we need to kill this hideous virus. So I don’t know what condition the herbs are in China right now, but if you can find herbs from China in America, buy them and take them every day as prescribed, maybe 3 times a day depending on how much pain you have. MAY YAHWEH AND JESUS CHRIST HAVE MERCY ON ALL OF US, for the doctors are the devil for that is why they have the two snakes dancing their way up the pole of their Western Medicine symbol. THIS IS A CONSPIRACY AGAINST THE AMERICAN PEOPLE. And if you don’t believe me, RESEARCH. I saw it with my own eyes in Austin, TX.

    As I have suffered this pain, I realized that the attorneys, the politicians, your government, doctors, nurses, and all the people we look up to….is as low as the prostitutes, drug addicts, and criminals that you look down upon. They are one in the same, they shall be placed in the same building in the last days for YOU SHALL NOT see them in the Kingdom of Heaven. IT HAS ALL BEEN A LIE. Open your eyes and take the veil off your face so you can see the TRUTH.

  147. I share your pain with everyone that has seen first hand what this
    drug that was so help people made things worst. My mother took remicade for athiriits even thou there was a artilce in our local papper I could not find anyone to stand up for her rights. She always knew that the injections were the stem of her complication. She developed lung cancer and passed away two years ago. If anyone can get someone to listen or do something God be with you! I failed to give her justice and still they use the drug. Would also like to find someone to help represent all poeple hurt or going to be hurt. Thank you

  148. If you live in New Mexico and you have seen the ABQ Health Partners TV advertisement, the Rheumatologists (RA) department do not care, so the commercials is a lie. ABQ Health Partners is affiliated with Lovelace and all the Rheumatologists with the exception of a few, is working together. I found maybe four that are not working with the rest. You have to find them in Albuquerque (ABQ). The doctors all talk to you like dirt and the nurses play games as they sticking the needles in your veins cause they are the ones causing the heart attacks, they are the ones causing the excessive stress on your body as the push the Remicade into your veins, for that is where all the diseases are coming from. The doctors and nurses act like they are your god because they know you are in pain and they are using it against you like the devil to get your soul. When they cancel your appointment it is to play the game so that way you will be in more pain and you look upon them like they are the god to relieve the pain when it was the doctors who put the pain there in the first place with the help of their nurses. The strangest thing to me is that as a patient, you only have 2 years to sue the doctors, but a lawyer have a lifetime to sue the doctors in a class action law suit. With this Rheumatoid Arthritis disease, it takes you two years to know what happened, and by the time the you know what had happened to you, the two year of statue of limitations has passed. But the lawyers can do a class action lawsuit that has no statue of limitations. I am still in pain but I went ahead and cancel my appointment with this vicious, non-human man who calls himself a specialist for pain, RA doctor. Cause he don’t give a darn, he don’t care that you are in pain. The doctors make you feel like you are lying, and your suffering is like “once upon a time” but without the magic, and it is because they do not care. They want to play games with you and collect as much insurance money as possible, as much INSURANCE MONEY as possible. And they don’t care if it is $5, as long as that $5 is in their pocket. Then after you deal with the wicked doctor, then you have to go to the wicked witch of the West just to get the Remicade. If you don’t know what the wicked witch of the West means, it is like the movie “Wizard of Oz” for that is who that will be sticking the needles in your veins. The nurses care even less than the doctors, THEY JUST DON’T CARE ABOUT YOU. It is not them that is suffering the great pain, it is not them that is in the bed every day, it is not them that is worried about surviving in this world, it is not their problem. THE MEDICAL PROFESSION provides this treatment which is Remicade and other IV infusions, THEY JUST DON’T CARE. You are just a dollar sign to them. They push you in, and push you out. There is no love in your treatments, THEY JUST DON’T CARE. These doctors and nurses know that you are in so much pain that you want to kill yourself, and you are hoping that they can help you for this will be your downfall. They know you are in pain, that is the tool they are using against you,YOUR PAIN, and so they don’t care.

  149. I understand that Remicade is a pretty serious drug Iand my prayers go out to people who suffer because of it, but I do want to point out to people who are deciding whether to start it or not that its not always bad. I’ve had crohns disease since I was 13 (21 now) and have been on remicade for about 5 years. I have to say that it has help my crohns quite a bit and I hardly ever get sick (once or twice a year and usually just a short cold). The only real side effect I get it some minor joint pain in my knee and back, but see as I’m a martial artist I can be certain that that is because of the remicade. I’d personally would recommend trying remicade. I also want to point out that in every single case of lymphoma the patient was on multiple drugs not just remicade. I would certainly not recommend being placed on multiple drugs

  150. I was diagnosed with ulcerative colitis in 2008. In 2009 I had a major flare that the level 1 drugs, even high doses of prednisone, would not help. Went to the hospital for 4 days to \”give the bowel a rest\”. Doctor suggested Remicade and, despite fears, I went ahead. I immediately began getting better. Nothing else had worked, but Remicade did. I wasn\’t perfect, but I was able to function again. A few months later I had another large flare, and they doubled the dose (every 4 weeks instead of every 8). This seemed to work and I have not had a flare since.

    However… over the last 3 months I\’ve began experiencing a burning-type of sensation all over my body, just under the skin. Almost like a sunburn but no visible rash, etc. The doctors are clueless, and all my GI doctor can say is \”hmmm, this isn\’t a typical Remicade reaction…\”. I have appointments scheduled with a neurologist and immunologist to rule other things out, but my gut feeling says it is something related to Remicade.

    I am scared to go off the drug, it has become a bit of a security blanket, but obviously I cannot tear up the rest of my body if in fact it is Remicade. I will take my chances if I have to and, worst case, get a colectomy. At least then I won\’t have to be on this drug.

    God bless to all those who are suffering, and all those who have lost loved ones due to these awful diseases. I do think that when dealing with a serious disease you have to keep things in perspective. The doctors are in fact human and yes they do make mistakes. But I believe the majority of the time they are doing the best they can to help you. Remicade is one of the last \”bullets\” in their arsenal for dealing with some of these diseases, and they would not prescribe if they didn\’t think the potential rewards outweighed the potential risks. Yes, there are certainly some incompetent doctors out there. It is up to us, the patients, to listen to our little voice, do research, read reviews on doctors online, and ultimately make the decision. Again, may God bless you and lead you all to good health.

  151. My sister has been on Remicade for over two years and now is breast feeding her son. She was told it is safe. Can anyone tell me what you have been told about breast feeding while on this drug or your experience? Her son has severe food allergies and eczema. Thank you!

  152. My husband has RA and about two years ago they talked us into him being infused with this drug. He took the infusion and immediately went into aliphatic shock. He now is unable to eat without being nauseated, has bad headaches, times when he has hives that cover his body and is very weak. This was after his first and only treatment. All I could think of that day as I drove to meet the ambulance at the hospital was I was going to loose him that day. Now from that infusion he not only suffers from his RA but also all the above.

  153. I’ve been on Remicade for about 10 years now. In the last 3 years i noticed that i got seasonal allergies and trouble breathing. I’ve been given inhalers or breathing treatments and it seemed to help. However in the last yesr i accidentally found out i have pulmonary nodules. Alot of them in both lungs. They are not sure as of yet the cause but could be a secondary infection due to remicade. I am now questioning whether i should go off it. Its helped my chrohns so much though..

  154. My husband died dec 31 2012 he was on remicade I know the remicade killed him.We were married ickifor 48 years Imiss him so much my life will never be the same.He had so many of the sideffects from remicade.He did not desere to die like he did.He was so sick couldnot breath his lungs was full of a fungal infection.I need a lawyer to help me prove that Remicade killed him.He started on Remicade in 2003 till 2012 we were never told about the BLACK BOX WARNINGS.Who was suppose to tell us?Please don’t take Remicade.

  155. My mom had leukoplakia on her tongue and had been followed for 15 years by an ENT doctor. She also suffered from rheumatoid arthritis. Both her ENT doctor and her arthritus doctor felt that it was safe for her to take Remicade infusions. She developed squamas cell carcinoma on her tongue and endured 2 horrific surgeries, radiation, tracheotomy and a feeding tube. She was never able to eat normally again, and succumbed to the cancer on May 11th, 2013, 11 months after the cancer was first diagnosed. The pain and suffering she went through was beyond words.

  156. I\\\\\\\\\\\\\\\’m sick of reading all these cases and what is being done. I was on it for two years and was told everything would be ok. But Aug. 1 2012 I was kicked, and a small Bruse opened up like a hot dog and my whole leg flesh eating diseases. died,induses coma, woke up to the whole front of my thigh missing. In bed for months rehab and monthly visits to hospital. After a year and a half still not ok.

  157. I have been on REMICADE for 15 years now and it has done wonders for me. to anyone that is scarred know that these risks are there but they really aren’t that common. If you look at the percentage of people who develop cancer while using remicade it is about 1-2%. which really is small. I am sorry to all of you that had to be apart of the 1-2% but in reality the drug doen’t cause cancer it only can progress a predisposition which is unfortunate.
    The other thing I might note is that if Remicade can prevent the use of corticosteroids your risk for side effects is greatly reduced! more than that of the use of remicade.
    I am PRO REMICADE 100%

  158. You are foolish to believe that the percentages reported for developing cancers, other complications or deaths from Remicade or any other drug is accurate. Most deaths by prescription drugs go unreported as many doctors don’t report a connection with the drug. The reality is that drug companies and doctors have a vested interest in not alarming you.
    The loss of our mother from cancer was due to Remicade. It has been stated by many of her doctors and specialists in the field that they believe it was a direct result of Remicade. Undeniable. However, I know that her cause of death was not reported as such.

  159. I was put on Remicade and had 3 infusions. Right before my fourth infusion, I came down with flu like symptons. It was discovered that I had Histplasmosis. I was air lifted to a regional trauma center where I spent the next 5 weeks in their ICU. My wife was told by doctors that it didn’t look good that I would make it. I was put on continuous dialysis for three weeks after my liver and kidneys shut down.
    I also had to have a tract put in. In addition, my heart went into AFIB, so I had to be shocked to get it back in rhythm. I was transferred back to my local hospital for 4 weeks while trying to recover. I caution anyone about trying remicade, especially if they live in the OHIO Valey region.
    I

  160. I feel Remicade caused my mother to get brain cancer and die at age 67. Mom started Remicade in 2002 and had injections every 8 weeks for 5 years for arthritis treatment. She was diagnosed with GBM Brain Cancer, had 5 surgeries, radiation, chemo, and died 6 months later. My family blames the Remicade.

  161. I was given Remicade on October 4th 2013 and the second dose was given to me on October 18th 2013 for the ulercertive colitis to control the diahria flariaton. I started to have headaches vomiting and tremors and I can’t get rid of it

  162. I have crohns disease since I was 9. Removed a foot and half when I was 37. Been in remission since 1997. The past 3 months I have been to the ER 3times. Diagnosed with crohns….its back. I have heard of remicaid only thru my aunt who had Arthritis. I went to visit my new crohns doctor, did colonoscopy. Inflamed and returned. He suggested remicaid so I took my 1st treatment in may. No immediate side effects. However I did have a bad tooth where I had broke it in half eating due to a cavity. Within 5 days… INTENSE PAIN!!!! Took amoxicillin for 7days before the dentist could pull it. Extremely painful before and after. Please fix anything before taking remicaid. I called the office and cancelled any further treatments. I will manage my diet and pray. Any feedback greatly appreciated.

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