Remicade Lawsuits

Add Comments

118

• Contact a Lawyer

  Submit information about your potential case to be reviewed by an attorney.

  1. Full Name(required)
  2. Primary Phone#(required)
  3. Alternative Phone#
  4. Email Address
  5. Mailing Address
  6. City
  7. StateSelect StateAlabamaAlaskaArizonaArkansasACaliforniaColoradoConnecticutDelawareDistrict of ColumbiaFloridaGeorgiaHawaiiIdahoIllinoisIndianaIowaKansasKentuckyLouisanaMaineMarylandMassachusettsMichiganMinnesotaMississippiMissouriMontanaNebraskaNevadaNew HampshireNew JerseyNew MexicoNew YorkNorth CarolinaNorth DakotaOhioOklahomaOregonPennsylvaniaRhode IslandSouth CarolinaSouoth DakotaTennesseeTexasUtahVermontVirginiaWashingtonWest VirginiaWisconsinWyoming
  8. Zip Code
  9. Details about Case

   

  cforms contact form by delicious:days

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.

Related Articles

• TNF Blockers Receive Black Box Warning About Risk of Childhood Cancer (8/5/2009)
• Rheumatoid Arthritis Drugs Do Not Increase Cancer Risk According to New Research (10/29/2008)
• Black Box Warning for Remicade, Enbrel and Other Rheumatoid Arthritis Drugs about Risk of Fungal Infection (9/5/2008)
• Enbrel Lawsuits (8/29/2008)
• FDA Investigates Possible Association of Enbrel, Humira and Remicade with Lymphoma Cancer in Children (6/5/2008)

There Are 118 Comments So Far • (Add Your Comments)

1. Pingback by FDA Investigates Possible Association of Enbrel, Humira and Remicade with Lymphoma Cancer in Children — AboutLawsuits.com on 5 June 2008:

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

2. Pingback by Humira Lawsuits : AboutLawsuits.com on 5 September 2008:

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

3. Pingback by Enbrel Lawsuits : AboutLawsuits.com on 5 September 2008:

   [...] 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. Pingback by Black Box Warning for Remicade, Enbrel and Other Rheumatoid Arthritis Drugs about Risk of Fungal Infection : AboutLawsuits.com on 5 September 2008:

   [...] 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. Comment by MADALINE on 28 October 2008:

   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. Pingback by Rheumatoid Arthritis Drugs Do Not Increase Cancer Risk According to New Research : AboutLawsuits.com on 29 October 2008:

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

7. Comment by john on 2 June 2009:

   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. Comment by Angela on 28 July 2009:

   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. Comment by Jill on 3 August 2009:

   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. Comment by nicole on 2 September 2009:

    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. Comment by Robert on 7 September 2009:

    Develpoed leukocytoclasic vasculiis from remicade in legs and gasroinestinal ract

12. Comment by Jenna on 8 September 2009:

    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. Comment by Julie on 18 September 2009:

    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. Comment by christina on 19 September 2009:

    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. Comment by Jodi on 23 September 2009:

    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. Comment by angie on 25 September 2009:

    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. Comment by April on 26 September 2009:

    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. Comment by Mike on 22 October 2009:

    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. Comment by Mary on 26 October 2009:

    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. Comment by Julie on 2 November 2009:

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

21. Comment by jed on 3 November 2009:

    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. Comment by Brenda on 9 November 2009:

    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. Comment by Lori on 11 November 2009:

    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. Comment by jack on 18 November 2009:

    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. Comment by tmano on 21 November 2009:

    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. Comment by Magda on 1 December 2009:

    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. Comment by Margie on 17 December 2009:

    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. Comment by Michelle on 22 December 2009:

    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. Comment by Ron on 30 December 2009:

    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. Comment by Barb on 13 January 2010:

    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. Comment by Jamey on 6 February 2010:

    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. Comment by Cassandra on 6 February 2010:

    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. Comment by Deb on 8 February 2010:

    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. Comment by Nancy on 24 February 2010:

    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. Comment by Terri on 3 March 2010:

    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. Comment by Lynn on 3 March 2010:

    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. Comment by Melissa on 1 April 2010:

    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. Comment by Tracy on 5 April 2010:

    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. Comment by Troy on 6 April 2010:

    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. Comment by Jon on 18 April 2010:

    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. Comment by Jon on 18 April 2010:

    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. Comment by Ron on 19 April 2010:

    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. Comment by sherman on 21 April 2010:

    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. Comment by Shyrlie on 22 April 2010:

    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. Comment by Tracy on 26 April 2010:

    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. Comment by Julie on 2 June 2010:

    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. Comment by Barbara on 7 June 2010:

    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. Comment by Linda on 8 June 2010:

    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. Comment by Tracy on 9 June 2010:

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

50. Comment by ernest on 14 June 2010:

    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. Comment by Cindy on 14 June 2010:

    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. Comment by Julie S on 27 June 2010:

    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. Comment by ken on 28 June 2010:

    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. Comment by Diane on 5 July 2010:

    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. Comment by Julie S on 5 July 2010:

    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. Comment by Debra on 8 July 2010:

    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. Comment by Tracy on 16 July 2010:

    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. Comment by Brenda on 19 July 2010:

    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. Comment by Marcella on 21 July 2010:

    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. Comment by Karen on 23 July 2010:

    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. Comment by kristy on 24 July 2010:

    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. Comment by Tracy on 27 July 2010:

    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. Comment by Bobbie on 28 July 2010:

    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. Comment by Andrela on 24 August 2010:

    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. Comment by cindy on 26 August 2010:

    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. Comment by Jill on 28 August 2010:

    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. Comment by Amanda on 29 August 2010:

    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. Comment by Amanda on 2 September 2010:

    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. Comment by Tracy on 3 September 2010:

    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. Comment by DIANA on 14 September 2010:

    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. Comment by Chris on 15 September 2010:

    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. Comment by Diane on 25 September 2010:

    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. Comment by melissa on 10 October 2010:

    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. Comment by melissa on 11 October 2010:

    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. Comment by Heather on 21 October 2010:

    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. Comment by Deb on 26 October 2010:

    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. Comment by Deb on 26 October 2010:

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

78. Comment by Karen on 29 October 2010:

    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. Comment by Jodi on 13 November 2010:

    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. Comment by Lavonna on 20 November 2010:

    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. Comment by ROBIN on 30 November 2010:

    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. Comment by Lilly on 10 December 2010:

    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. Comment by Tracy on 13 December 2010:

    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. Comment by Bryan on 29 December 2010:

    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. Comment by Tracy on 1 January 2011:

    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. Comment by cindy on 23 January 2011:

    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. Comment by Angel on 27 January 2011:

    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. Comment by Cristy on 1 February 2011:

    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. Comment by Diane on 5 February 2011:

    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. Comment by Marial on 8 February 2011:

    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. Comment by Bryan on 18 April 2011:

    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. Comment by Debra on 22 June 2011:

    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. Comment by Mike on 24 June 2011:

    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. Comment by Cindy on 28 June 2011:

    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. Comment by Daniel on 2 July 2011:

    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. Comment by Diane on 16 August 2011:

    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. Comment by Monica on 28 August 2011:

    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. Comment by Sheila on 20 September 2011:

    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. Comment by Patty on 25 September 2011:

    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. Comment by Rick on 12 October 2011:

     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. Comment by Ragena on 1 November 2011:

     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. Comment by Sandy on 1 November 2011:

     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. Comment by kristy f on 15 November 2011:

     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. Comment by kristy f on 15 November 2011:

     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. Comment by kristy f on 15 November 2011:

     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. Comment by Linda M on 30 November 2011:

     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. Comment by Tracy on 3 December 2011:

     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. Comment by reza on 8 December 2011:

     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. Comment by Catherine on 20 December 2011:

     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. Comment by Steve L on 3 January 2012:

     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. Comment by Anne on 6 January 2012:

     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. Comment by Regina on 9 January 2012:

     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. Comment by Regina on 30 January 2012:

     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. Comment by Kelly on 4 February 2012:

     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. Comment by Sharon on 13 February 2012:

     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. Comment by Regina on 16 February 2012:

     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. Comment by Heather on 23 March 2012:

     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. Comment by Lori on 29 March 2012:

     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!!!!

Post Your Comments

cforms contact form by delicious:days