Remicade Lawsuits
Last Updated: August 2008 • 69 Comments
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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.
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 [...]
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 [...]
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. [...]
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 [...]
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.
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 [...]
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.
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.
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.
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.
Comment by Robert on 7 September 2009:
Develpoed leukocytoclasic vasculiis from remicade in legs and gasroinestinal ract
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.
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.
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.
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!
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.
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
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?
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.
Comment by Julie on 2 November 2009:
Trying to find someone to stand by all people who suffered from this nasty drug.
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
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.
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
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!
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.
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
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!)
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.
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 ?
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?
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
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?
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?
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.
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.
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!!
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!
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.
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.
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.
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.
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?
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
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?
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.
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.
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.
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.
Comment by Tracy on 9 June 2010:
Julie,
What was the reason that you went on Remicade in the first place?
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
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.
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?
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.
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.
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>
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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!!
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?
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.