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.

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.

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.

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!

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??

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.

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

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!!!

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..

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.

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.

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.

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.

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..

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.

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?

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!!

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.

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.

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.

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.

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. 🙂

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.

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.

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.

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.

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.

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.

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>

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.

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.

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?

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.

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

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

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.

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.

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.

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.

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?

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

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?

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.

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.

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.

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.

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!

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!!

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.

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.