Drug Ratings for REMICADE

Average Rating: 3.7 (394 Ratings)

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5=HIGH (this medicine cured me or helped me a great deal.)   

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    Charts & graphs: Reviews Summary for REMICADE  | Top 10 Adverse Effects (reported to FDA)

RATING  REASONSIDE EFFECTS FOR REMICADECOMMENTSSEXAGEDURATION/
DOSAGE
DATE ADDED
sort down sort up F  M  
 1  arthritis Pneumonitis, bleeding lungs which lead to ventilator for 2 months. Hair fell out and medically induced hyperglycemia. My Mother was given injection after the 2nd she became extremely ill nearly passed away. After months of hospitalization and learning to walk again etc. She was NEVER THE SAME AND PASSED AWAY March 18, 2014. I would Never recommend this med to ANYONE!! F 76 2 times
7/28/2014
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 1  arthritis Pneumonitis, bleeding lungs which lead to ventilator for 2 months. Hair fell out and medically induced hyperglycemia. My Mother was given injection after the 2nd she became extremely ill nearly passed away. After months of hospitalization and learning to walk again etc. She was NEVER THE SAME AND PASSED AWAY March 18, 2014. I would Never recommend this med to ANYONE!! F 76 2 times
7/28/2014
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 1  JIA juvenile arthritis / uveitis Extremely tired a week after the infusion. Mood swings. No patience at all, poor concentration. Extreme rash around her eyes. Tingling in her arms and then she loses strength and sometimes drops things. Headache , she looks grey with no life in her. I want my vibrant girl back! F 9 3 months
1X M
4/15/2014
Email
 1  zieke van chron prikkelhoest, kortademheid, neerslachtig,duiseligheid ademnood hartklopingen. hoe vlugger ze de remicade gaven hoe slechter en zelfs prikkelend en verward ik was. Liep rond lijk een dronkaard. Laatst gaven ze het in driekwart uur en was fataal voor mij.Binnen de 3 weken verslechterde ik op mijn kortademheid en hartkloppingen heb mij in het ziekenhuis aangemeld en kwamen daar tot vaststelling dat ik longfibrose had. Nu sta ik dik van de medrol dat ze vlug als medictie gaven en nu heb ik nog het cushingsyndroom erbij. F 64 8 weeks
86 kg 1X O
2/25/2014
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 1  Crohns I went into a hypersensitivity mode and became very confused with a head act hat lasted for 45 days and lost 70 pounds of weight. On top of this whole thing I was going to my GI dr and primary dr complaining about my problems and neither of them figured out I was having a reaction until I suffered severally and don't no if ill ever be the same again. M 48 5 months
70
12/11/2013
Email
 1  chrons disease After taking remicade from nov 2004 thru nov 2006. I was taken off after being diagnosed with chf. I am dying due to remicde causing my chf. No one will help me due to time lapse. Makers of remicade are criminal. Stephen Hoffpauir, crowley, la. 70526. M 51 2 years
max dosage
10/9/2013
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 1  Psoriatic Arthritis The day of infusion I'm wired. That is followed by severe mood swings ranging from anger to depression, my head feels like its going to explode, my eyes hurt, and I've lost all my energy in the days following the infusion. I'd rather live with pain than live like this. It makes me so miserable that it is affecting my family life. I just spoke with my doctor and I'm officially off this junk. If you read the various forums on side effects and what patients are reporting you can see there are issues but the medical professionals make you feel like you're a psycho because they do not have documented scientific evidence that these side effects exist. M 64
400 MG 1X O
5/6/2013

 1  RA Hives at first, possibly taste and hair loss I had been taking Enbrel 4 years and it stopped working. Remicade just had little effect, and that didn't last but four weeks. - I was on 6 week infusion intervals. INCREDIBLY EXPENSIVE. I was fortunate to have medicare. M 82 4 months
infusion 1X O
5/6/2013
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 1  Arthritis My mum died 6days after having this horrible drug!!! she was too unwell to have it in the beginning! So if u suffer from regular infection or a low immune system do not go ahead with remicade! F 52 1 days
4/9/2013
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 1  Hidradenitis Suppurativa During 2nd infusion: short of breath, pulse was 145, my blood pressure was 192/110, legs tingly and numb, eyes burning, neck and jaw were tight, my jaw was chattering, feeling of nonstop adrenaline rush in chest, felt very faint/dizzy/heavy, whites of my eyes turned bright red, received benadryl and cortizone in IV, moved to ER from infusion center not sure if the benefits are worth the risks F 35
1X D
3/14/2013

 1  Ulcerative colitis Extremely dry skin, lost sense of smell for abt 2 months, every single hair follicle on my head burned and hurt and then I started balding. Arthritis in my hands and knees, tendonitis in my achilles tendons, dry inflamed eyes. Remicade did nothing for my UC, but it ruined the rest of my body. I haven't taken it in 3 months and never will again, but the side effects still remain. I hope to God they will go away. I had only 3 loading doses, and on the 3rd one I had a horrible reaction where I couldn't breath and started sweating profusely-- instead of stopping the infusion, they just shot me up with a bunch of stuff to stop my reaction and continued till the bag was empty. I used to have oily hair and skin, now I'm dry and brittle... I could go a year without washing my hair that's how dry it is. I have so much pain from the arthritis it gave me, and I can barely open my eyes at night because they are glued to my eyeballs from being so dry at night. It hurts to walk because of the pain in my achilles tendons. All of my hair is falling out. I used to have thick thick long hair, now I only have 1/3 of it left and it's still falling out I won't be surprised if I go bald. So much has fallen out that I have a strange receding hairline. This is the worst drug you could ever take for UC. I never knew that there were mice antibodies or proteins in there, which is what causes these horrible reactions. If you are desperate, try Humira instead as it is made with HUMAN antibodies, not mice, and the bad reactions are much less in comparison. F 31 5 months
1X O
2/22/2013
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 1  pars planitis ETC.... Numbness tingling in arms, legs,hands,feet slurred speech, disorrented, joint pain, headaches, neck pain, worse eye pain, dry mouth, anxiety. I've lost my job, sanity and all of my doctors are jackasses so I have decided to go all natural and if it means I go blind, so be it! Maybe that's the way God intent ex me to be but I'd rather be blind and healthy then sick and miserable!! I hope Thu helps someone out here!!!! Don't take this drug!!!! Its nasty!!!!! F 29 10 months
not sure
2/21/2013
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 1  Crohn's The 3rd infusion I broke out in hives, throat closed, etc. I was prescribed benadryl b4 infusion & had infusion rate decreased. I had similiar reactions probably 3-4 x's at least thru out yrs. I was nvr very consistent w/ infusion & had them every 10-12 wks instead of every 8. I quit taking Remi when I got pregnant & breast fed for almost 1.5 yrs. Remi didnt work as well when I resumed so my dose was doubled. That was 2 yrs ago. 4 wks after last infusion I noticed the following: hard, swollen lymph nodes all over body (neck the size of golf balls); dry scaly skin including soars in scalp; rash on face, neck, back, arms, & legs; itchy skin; night sweats; chest & back pain; joint & muscle pain; sinus soars; dry cough; neuropathy all over body; headaches; chills w/out fever; hair loss; pee all the time; extreme tiredness; the list goes on. I had these symptoms b4 but not at same time & minor versions so nvr put 2 & 2 together. My GI told me that I prob. h Not sure how I feel about Remicade? I guess it will depend on whether I have something life threatening from it after further testing. I was always afraid of Remicade given its strength and the side effects that are possible hence me getting it every 10-12 wks instead of every 8. Given the extent of my disease, my GI really encouraged me to use it. I do think it played a role in me being in remission (or close to it anyway) for a decade or longer. CAUTION: Listen to your body...closely. YOU know it better than your doctor. If you think something is "off", communicate it immediately. If you don't think you should take it any longer, than don't, and come up with a better game plan. Immunologically, this medication is pretty scary stuff... I can personally attest to that. F 36 12 years
1X O
11/2/2012
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 1  Psoriasis SEVERE JOINT PAIN, CHEST PAIN, FATIGUE After the first infusion my psoriasis went away.....NOT WORTH IT! I was getting infusions every 8 weeks and about the time my 6th infusion was due...EXCRUTIATING JOINT PAIN EVERYWHERE. It felt like I had been in a severe car accident and every bone, muscle, and joint hurt tremendously. I have a 9 month old baby who I can't even pick up in the morning because my joints in my hands hurt so bad. I wish I had never taken this horrible drug! I was diagnosed with drug induced lupus from the Remicade. NIghtmare. I have no idea how long this is going to go on for and the prednisone and pain medicine only gives me little relief. The rheumatologist wants me to start plaquenil but after having such horrible side effects from Remicade I'm scared to start a new medication. I was so much better off before starting Remicade. My advice to anyone out there thinking about taking a biologic....DON'T DO IT!!!! F 38 6 days
8X O
7/14/2012
Email
 1  RA; I don't take drugs now I took Arava and it gave me periodic psoriasis like rashes; I am warning people not to take drugs, I am effectively cured naturally. I have cured myself with apple cidar vinegar. To the lady posting on 5/31 who got cancer from remicade your e-mail does not work for me. You can potentially cure your breast cancer with vitamin C crystals or injections and manage your psoriasis with apple cidar vinegar externally and internally. It can also effectively cure Crohn's/Colitis but you may also need vegetable juice fasting. Much of this is at doctoryourself.com and earthclinic.com, or you can e-mail me. 'Just say no to drugs' (Nancy Reagan). M 57 0 days
0 1X D
6/21/2012
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 1  Crohn's Disease None Did not work. Even doubled the doses the last two times and no results M 39 1.5 years
1X AN
6/19/2012

 1  Crohns disease Was diagnosed with sarcoidosis (enlarged lymph nodes in my chest 6 months after stopping Remicade - I did not have this when I started Remicade This drug caused me to be hospitalized on several occasions - the final straw was I ended up in the hospital 3 days with a very severe rash all over my body that started within a few hours after my infusion - I would NOT recommend this drug to anyone as my blood work went off the charts I ended up with pneumonia and now I have sarcoid (and had to have a medialstenoscpy to get bioposis in my chest) I have a hard time breathing, am so tired no energy now from Sarcoid - both specialists blame the Remicade for what has happened to me but no one will put it in writing. I would like to see how many other people have had this problem - I was only on it 2 years - my GI wanted me to start Humira - NO WAY - my crohns disease is now controlled by a NO FIBER diet and have had no GI problems since I got off Remicade but now have worse problems from it F 63 2 years
8 weeks 1X D
5/10/2012
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 1  Yes Was on Remicade Infusion took first 3 infusions. After 3rd infusion have burning feeling all over body. When I swallow it hurts. Have done test everything seems normal. Only thing is the Remicade. No problem with first infusions but felt no difference just a slight change in pain. Overall no difference. Now I have fatigue night sweat and overall joint pain. F 53
3X AN
5/9/2012

 1  Psoriasis During treatment: Nausea, severe chest pain, hives, & itching and burning all over. F 56 6 months
2/28/2012

 1  Crohn's Severe joint pain. Diagnosed with Drug Induced Lupus. Drs. did not want to acknowledge that remicade could cause this and continued the infusions until I did my homework and stopped it. Found a new GI and a rheumatologist. F 52
1X O
1/23/2012
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 1  Ulcerative Colitis Joint pain in every joint in my body, which got worse with each infusion. Stiffness. Excessive sweating at night, chills, yeast infections, weight gain. I wish I would have listened to all the actual people on here who said this medication causes joint pain instead of my Dr! F 42 2 months
1X D
1/22/2012
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 1  Crohns Disease Severe Joint pain- headaches-swelling of feet and hands-rashes. Serum Sickness- Lupus, and Steven Johnson Syndrom. Numbness and tingling in arms, hands, and legs. Couldn't move head, arms, legs, and hips. Exray taken- they said it looked like I was in a car accident- dislocated jaw, 4 protruding disc in neck. Tumor on left shoulder, I stuttered for 2 months. I still have protruding disc, lupus, numbness and tingling- it's been 4 years since I took remicade. If you feel pain- stop the medication.. Doctors will tell you it's normal or that it will go away with predisone- it won't. It gets worse you won't be able to walk or sit up. Knees will feel like your getting hit with a baseball bat everytime you go to sit or stand. HORRIBLE!! I went 9 months not being able to move without help or pain. They don't know anything about this med.. My blood test were off the charts.. And they hide it- my medical records through doctors office were wiped clean of my complaints.. But luckly I had gone to the ER on several occasion and it was documented through them.. It took me 4 months to get medical records from my Rheumy, and a threatening phone call from another Rheumy. Be Careful, and keep records. F 31 2 months
1X M
1/12/2012
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 1  Colitis Severe reaction, still nausea 8 wks on, still no appetite. Heart palpitations, low BP, low blood sugar. Ached from head to toe for 4 days unable to get out of bed due to this. Spent 8 days in hospital was admitted after having reaction during infusion, was almost out of it & did nothing but sleep felt so drugged up. Scary experience I'm now 8 wks since last infusion things are better but I still don't feel right still NO appetite & lost a total of 2 stone 10lbs in 8 weeks. Look very pale & drawn. Constant nausea still . Was doing so well on it. Consultant confirmed it's a severe reaction, a frightening one for me as I felt I wasn't in control of my body & scary for my parents to now see me a shadow of my former self. *not everyone gets a reaction F 31 1 years
12/30/2011

 1  Ulcerative colitis I have had infusions for UC for 1 1/2 yrs every 8 wks. No improvement. Had my first 6 wk infusion this week. Guess we will see. F 60 1 years
12/18/2011

 1  Crohn's I was getting an infusion once every 8 weeks One word: Histoplasmosis. I haven't seen it here. I didn't know what it was until it almost killed me. It was caused because my immune system was so compromised that when I went to the Southern region of the US I got a fungal infection called Histoplasmosis. I was in the hospital for 28 days. The docs couldn't figure out what was wrong. My kidneys and heart were starting to fail. Had to go through a lung and liver biopsy. They thought it was a lung infection. Once they finally figured it out and treated me I get better. But people don't know this can happen. I had a high fever and generally felt bad for about a week before I was admitted to the hospital. Saw my regular doc and he gave me anit-biotics for bronchitis, but I kept getting worse. I didn't realise how sick I was until my daughter made me go and took me to the ER. Tell your doctor you are on Remicade and to check for fungal infections if you get sick and think it's a flu or virus. F 56 6 years
Don't know 1X O
10/5/2011
Email
 1  CD Was referred as an reaction which caused swelling of both hands and forearms, witch resulted after several months, with several specialist's an outcome including surgery and elevated levels of things that I do not understand including lupus. After 2 years later the drug has left my body and all blood levels have returned to normal, feeling has resumed but have been left with ongoing problems for life Does not work for everyone, there is a risk involved, not every, but not any health professional will willfully agree F 47 4 months
? 1X O
9/23/2011

 1  Crohn's Disease Severe hives after a week. She was tired all the time. My mother was rushed to the ER was told it wasnt a reaction. Yesterday while she was having remicade treatment she threw up, passed out and stopped breathing. I am writting this for my mother who is currently in the hospital because of the reaction it had on her. F 65 1 months
1X O
2/11/2011

 1  fistulas Joint pain that moves all over my body. Knees, to hands, wrists, elbows, jaw, fingers, neck. I am 46 yrs old and very active (had colon cancer 12 yrs ago) and been doing great (minus fistulas). Took drug to help. Remedy way worse than original issues. Stopped plan for next infusion this week. Been 2 months since last infusion. Pain meds do not help. High doses of prendisone help. At night gets worse. Any one know how long these side effects will last? Very scary sife effects and no one has answers. At first, all went well first 2 treatments. (About 9 weeks apart) Then notice right hand and fingers tight or locked up. Assume too much racquetball or mouse on computer. Then next treatment...both hands, followed by elbow. Each dose created more issues after about 3 weeks. Early Dec 2010, resort to medro dose pack...helps for a short term. Currently the past week, pain had made life upside down. Feel 85 yrs old. Went from biking, golf sports etc to difficulty getting up from chair or walking! What a sick disturbing position. Pray this wears off soon. M 46 8 months
1X O
1/19/2011
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 1  Ulcerative Colitis About 5 days after my first infusion, I developed severe, excruciating lower back and hip pain that was a 10+ on my pain scale. Pain medications would not relieve this and I could not walk. As the days progressed, it go worse and would show up in a different joint every night. My only relief was that it would go away by morning. However, then I was tired all day from lost sleep. I had never had joint pain in my life before. I told my doctors no more Remicade and cancelled my second infusion. The pain let up after 12 days only to start up again last night. I am worried it may never go away. Not worth the joint pain! I can't believe this started after one infusion. I didn't even want to take this medication and already decided I would rather have surgery than deal with what I felt was a dangerous drug. However, I was in the hospital for two weeks with a flare that wouldn't respond to steroids and was rapidly losing weight and getting sicker. My doctor wanted to end my flare and get me strong again for surgery using 3 infusions of Remicade as an intermediate step. Thinking that only 3 infusions couldn't possibly cause permanent problems, I agreed. The 1st infusion did end the flare but then the intense joint pain started. I have heard that the pain is usually temporary so I am crossing my fingers. I would hate to cure my UC with surgery only to be left with the debilitating joint pain from the one infusion of Remicade. F 38 17 days
? 1X D
10/18/2010

 1  Crohns None at first. Then, severe neuropathies in toes and fingers. Blisters on toes. At five weeks, started vomiting and retching uncontrollably. Dystonias after the vomiting. M 12 7 months
1X O
9/15/2010

 1  Psoriasis severe Stopped breathing completely, almost died, they had to put all kinds of drugs in the iv to revive me Be careful if you start coughing at the beginning of an infusion this may be the start of anaphylaxis F 40 3 months
? 1X M
5/12/2010
Email
 1  Ulcerative Colitis Extreme, horrible back and chest pain. I have also had joint pain in my knees and fingers. It has been about a month since my third treatment, and the pain is getting worse. Cannot take deep breaths, sneeze or cough without horrible pain in my back, and it feels like someone is standing on my chest. My doctor took me off the drug immediately, and told me the side effects will eventually go away. We will see. The medicine has not even made any improvement in my UC whatsoever. The risks are not worth the possible benefits, of which there were none for me, anyway. F 28 3 months
1X O
4/25/2010

 1  crohns It was a God send at first. But I was so sick I was at the point of kill me or cure me. I should of been stronger and really researched what a Black Box Labeled Drug means. Because it did almost kill me. Because of me the warning label has been changed yet again. This is a very scary drug. I contracted MUCORMYCOSIS a rare and 96% fatal infection. My face is disfigured now and I can take nothing for my crohns. I am furious with centacor the manufacture of remicade. And our goverment. It is made from mouse and humane protein. If you ask where they get the humane protein you will not get and answere and if you do some home work you will find out that the lab mice and least some of them have been proven to be sick due to lab mutations to make them "better" and that little bag of poison cost around $6000.00 Since when did mice and dead babys cost so much? Biomed is the same as Biowarfar. Be afraid. the 6mp was giving you cancer the steroids made you crazy and the other stuff did F 40 0 days
0 1X M
3/2/2010
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History
 1  I have Crohn's disease I just had my third treatment about 3 weeks ago and during the treatment i started feeling really hot,swollen, and i couldnt breathe. The doctors finally came to check me and gave me oxygen and benadryl then i felt fine. They gave me the rest of the treatment slowly and sent me home. I woke up that night in tears i couldnt move. My boyfriend had to take me to the hospital all side affects from remicade. My docotor told me i got short term lopus from this medication and arthritus. At first the treatment was working the best then any of the others ive been given and now they took me off cause they reactions. Not something you want to go through all the time. I wish everyone the best of luck when taking this treatment. Make sure to consult your doctors if you start getting any new problems! F 22 4 months
9/9/2009

 1  Crohn's Stopped breathing Horrible, almost died. All other crohn's meds had terrible side effects too. Tried Maker's Diet (get in any book store). Symptom-free for 2 years now. On no meds at all. Please try. F 26 2 months
8/4/2009

 1  Rheumatoid Arthritis Tired for days after, tightness in the chest, itchy, and weak I went to the doctor, after going to work one day and by the end of 12 hour shift not being able to walk upright without pain. My regular doctor thought maybe I had Fibro Myalia, because of the problems I was having. So he sent me to a rheumatoid doctor. After blood test that doctor told me I had RA and put me on steriods and methotrexate. When that combo didnt help, he put me on Embrel shots. One a week as prescribed. . they didnt seem to be helping but the doctor says it would take time. My insurance only covers 6 grand a year with the shots and insurance i was footing the full bill in 5 months and still not feeling better. So doctor got me on Remicade infusions as an out patient. So was covered by medical insurance. Frst infusion was groggy and tightness in chest. Blood pressure dropped so severely that the nurses were concerned that something was wrong. Started out one infusion every 8 weeks. . not helpign so then was every 6 weeks. . still no help. Blood work doctor said looked promising. I was then going once every month. Still groggy and sleeping through it. Sleepy for days after. Still in pain and getting depressed. Doctor had my infusion dose raised as high as he dare go with it. I was not feeling better, but he was telling me to give it time. Was almost 2 and half years of infusions. He then informed me he was moving and sent me to a new rheumatoid doctor. Who did not recieve all my records from first doctor so he sent me to do new tests. The new doctor informed me F 34 2.5 years
4/10/2009
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 1  crohns disease Rash on side of lips, extreme muscle pain,headachs, Many kidney stones est in the hundreds. kidney stone surgery at least half the time I get one. (LONG TERM USERS BE AWARE OF REMECADE, THIS IS MISERABLE) I was diagnosed with crohns disease in 1988, during the next 5 years I was in and out of the hospital. In april 1993 I had an emergency bowel recection. The pain went away, but I had frequent trips to the bathroom. I have taken every medicine on the market (at times I felt like a test animal). I was On prednisone for 10 years. I started remecade in 2000. It was great until now. I have extreme muscle pain to the extent I have not worked since march 2008. The muscle pain is worse than the crohs disease. I have not taken the last treatment and have felt some better. I have been to Duke University and am going back Sept. 08, 2008 for my second visit , also been to University of Georgia medical college where I was treated like I was trying to get disability but I could have gotten it 10 years earlier but I didn't want it. I never missed more than 4 weeks of work at any given time until now. M 38 8 years
9/2/2008
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 1  ulcerated colonitis Severe nausea, loss of appepitite( I lost 17lbs in four weeks following my third remicade infussion.) Also, I had severe anxiety, which progressed after IV infussions one and two; by the third IV my aniexty continued to escalate and I was unable to function, which lead to severe depression!!! I have never felt so horrible in my life. I strongly do not reccommend remicade!!! Although my UC is severe, I'll take the disease, steriods and all over remicade. I hope all of the cns side effects wear off soon! M 23 2 months
7/7/2008

 1  Rheumatoid Arthritis I was infected with histoplasmosis. Now I cannot take any biologic without also taking Sporanox (forever). Had I been warned about histoplasmosis, I could probably have avoided it by wearing a dust mask when working in dusty conditions (mowing weeds). There seems to be a closer association between Remicade and histoplasmosis that with Enbrel and histoplasmosis. I am now beginning tratment with Enbrel. Remicade was great for my RA until this problem. M 64 6 years
3/15/2008

 1  Ulcerative Colitis I only had one injection, but several days before I was due for my second I experienced a horrible reaction. I had a high fever, was unable to get out of bed due to debilitating abdominal cramping, was running to the bathroom every 10 minutes (when I could muster up enough strength to actually get up), and had a rash covering my entire body. I had to go on 40 mg of Prednisone to counteract the reactions. I've heard it works wonders for other people, so I suppose it's worth a try. Check out my blog on UC at: www.UCgirl.blogspot.com F 20 2 weeks
2/19/2008

 1   Remicade Linked to Stevens Johnson Syndrome
6/30/2006

 1  Crohn's Disease hives, racing heart, throat closing up, inability to breathe, bright red skin, eyes protrusion, sore joints, vomiting, constipation after infusions...all occuring during or a few hours to days after infusions Had 6 infusions, become more and more allergic to the drug after each infusion. Almost died from the reaction the last infusion I had. Can't take this drug anymore. F 21 6 months
6/7/2006

 2  psoriatic arthritis Instead of black mold lung disease it was an infection of Candida Albicans. That clarified by my GP this morning. The doctor was quite concerned as my "normal" heart ECG showed signs of damage. I feel horrible. M 66 8 weeks
UKN 1X D
1/17/2014
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History
 2  Crohn's my skin got extremely dry and itchy. I have intense itching episodes now whenever I workout or my skin is warmed/hot shower. They are crippling I have had to leave the gym many times. Vision problems, thinned my thick hair out really quickly, devastating. Hair loss. Joint pain, scalp issues, depression, extreme fatigue, sensitivity to the cold. This drug is awful, I would not recommend it unless you were desperate for relief. It does the job to control the Crohn's symptoms but at the expense of the health of your body. I feel like crap. Extremely fatigued all the time. Most GI doctors don't care at all about the other symptoms. I'm skipping my 4th dose of Remicade after the extreme itching episodes started. My hair and visions is ruined. I hope everything returns to normal after I have stopped. I'm going to try my best to treat Cohn's with alternative treatments. F the GI Drs.!!!!! M 26 3 months
2X M
1/2/2014
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 2  Crohn's and reactive arthritis Itchy between infusions, increasing nausea after infusion even though I was taking anti-histamines. Sadness. I took Remicade for a year and came off approximately 2.5 months ago. It worked well for both my crohn's and reactive arthritis. However, the infusions made me increasingly nauseous and itchy - I've never had allergic reactions and now I seem to be allergic to a whole range of things. Remicade? The last infusion made me feel very ill and my feet and face were itching, etc. Eight weeks later when I went in for the next dose I told the nurse how I had felt, she spoke to the doctor and they decided they didn't want to do the infusion until I had spoken to my Rheumatologist. I made an apt with the Rheumatologist and when I told him he said (very casually) "it's lucky you didn't take it, you could have died". Now I don't want to be a panic merchant, however, I wasn't told when I began Remicade that the allergy to the drug can increase over infusions and can potentially be fatal. If you have allergy symptoms (I was even taking anti-histamines), just be careful, especially if they become greater with each infusion. Dr wanted me to swap to Humira, but after the Remicade experience I'm just too chicken. I'm not on anything now except huge quantities of fish oil and magnesium. It's nerve-wracking because I've been on drugs forever, but I actually do feel so much better mentally and physically and this is possibly a result of the Remicade as it can intervene in the course of the disease. The drug is a double-edged sword! F 41 1 years
1X O
11/16/2013
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 2  Psoriatic arthritis Very swollen feet and ankles and severe muscle pain I was given Remicade thru IV and than 2 weeks later, than 4 weeks later and from there it would be every 6 weeks. After going thru the initial introduction of Remicade, I do not like how I feel and the swelling keeps getting worse after each treatment along with continuos muscle pain! F 53 3 times
400 mg 1X O
8/25/2013
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 2  Crohns disease Felt high after infusions. Experienced mysterious night itching with no rash although this may've been from Azathioprine (doctors do not know). Seemed to trigger symptoms of Crohns disease or simply was ineffective. M 38 6 months
7/6/2013

 2  Ulcerative Colitis Fever, chills, night sweat, fatigue, vision changes, trouble sleeping Two days after my first infusion I had high fever for two days, and I've had intermittent low-grade fever, night sweats, and chills for the last several weeks. I have never been someone who gets random fevers until now. I was hospitalized for my fevers and dehydration one week after my first infusion, was given antibiotics, but no infection was found. The hospital also put me on 40mg of prednisone a day, which is the only thing that has positively helped my UC. My doc told me to start slowly tapering the prednisone, but as soon as I did that my UC came back immediately. Not sure the Remicade is doing anything, and given how it's kind of messed up my life I think I'm about done with it. The side effects have been worse than my original UC problems. M 26 4 weeks
1X O
3/12/2012
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 2  Crohn's Disease I have only taken two doses but I did not see any relief and the doctor said it wasn't working. I did feel very tired for the first two weeks after taken medication. I am scheduled to have adhesions removed and a resection done on Tuesday. He said it is very unlikely that I will need a colonstomy bag. The doctor said I will be like a new person after four weeks. Can anyone give me advise or what to expect following surgery. I am only 42 years old and am very scared. I am a new grandmother and do not get to spend much time with her due to constant pain. Can the Crohn's return again? F 42 30 days
300 2X M
2/9/2012
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 2  Crohn's Disease Had my first infusion on a Friday, the next Wed, I developed swollen lymph nodes in my head and neck, pain in my neck and head, I could not open my mouth or move my jaw without horrible pain, I have joint pain and I also have a weird, tight, slight tingling in my arms (like I continute to have my blood pressure taken) and was kept in the hospital all day today for all this and Tachycardia. They belive it is due to the remicade. I also now have sinusitis. F 35 7 days
IDK 1X O
11/25/2011
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 2  PSORIATIC ARTHRITIS While getting first infusion, my blood pressure went up. Also, I had trouble breathing. Infusion was continued.A day later, had migraines start Never had migraines before. A week later, I got a rash all over my body. Stabbing pains in my body, fatigued and increased sleeping. 2 weeks after infusion, started throwing up, migraines continue and nothing works, dizziness,chills,night sweats,could not eat anything without vomiting. Feel much worst than where I was before the infusion... works for some people, but be careful. This drug can stop your breathing. Heed the warning signs. I regret trying this drug as it made me worst. I am going to seek other natural remedies as the price to pay for side effects is too much for me. Good luck to everyone. F 45 1 times
30 MG 1X O
9/7/2011
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 2  psoriatic arthritis Frequent infections in the fingers (nail beds) and urinary tract infections. Headaches and dizziness too. pain at injection site for weeks. Also taking methotrexate. Not sure if this is for me, very worried about the side effects of this medicine. They recently increased my dose and side effects are worse. F 46 1 years
60mg 1X M
3/30/2011

 2  crohn's Writing for my daughter, started Remicade shortly before bowel resection. Seemed to work for about 4 years with mild side effects. Recently developed horrible psoriasis-like rash (now well documented in the literature)- over about 75% body much worse than the Crohn's. No drugs working, need to go off Remicade. F 30 4 years
1X M
10/10/2010
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 2  JRA No side effects during the infusion itself - so far it has been an enjoyable experience due to the IV benadryl. Afterwards, I feel itchy, puffy, and extremely tired sometimes for days. With this last infusion (my 6th), my joints felt noticeably worse for 2-3 days, in an unusual way - sharp pain, not the usual arthritis ache. Non day 4 after last infusion I am still extremely tired but at least my joints are getting back to where they were before the infusion. I am underwhelmed by this medication's effectiveness. It has been nothing like the first time I took Enbrel, which gave me the sensation for the first time in my life what it would be like to live without JRA. Unfortunately, Enbrel stopped working for me. My doctor has increased the dosage of Remicade several times to see if it's a dosage issue. With this last cycle, I feel like it gave out about a week short of my infusion date. I learned from the nurses that sometimes the doctor will shorten the period between infusions. I take this in addition to prednisone and methotrexate injections (and a few other medications). Have to admit I am not always timely with the methotrexate injections so I can't say if this regime is effective due to user error. :-) I am thankful that this medication allowed me to stop doing 2 of 3 self-administered injections per week. Just before Remicade I tried Humira which was not effective and stung intensely during injection. F 45 1 years
1X O
8/22/2010

 2  U C / Ankylosing Spondylitis Had UC for 4yrs tried Remicade for it but it didn't work. Recently my Dr started giving it to me for Ankylosing Spondylitis and my throat closed during my infusion! I was really glad I was at my Dr's office. I broke out into hives and started choking. My Dr took me off of it now I am going to try Humaira. My Dr said I built up antibodies to Remicade over the years and now I can never take it again. F 25 2 months
2X M
3/7/2010
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 2  rheumatoid arthritis have had 2 iv infusions so far..my 1st infusion was 2 weeks ago. almost instantly i felt back pain as i sat in that chair..felt very sleepy, nurse said it was due to the benadryl. after a few minutes i could feel the pain spreading through out my whole body.. my back pain never went away and i actually felt worse than before my infusion. i called my doctor a few days before my 2nd infusion and told her about the side effects and back pain and she said i had to keep going. so thursday i had my second infusion and the same thing happened, as she injected the remicade into the line i felt the sharp pain in my back..it is now sunday and i have had a severe headache since thursday, back pain worse and every joint in my body aches bad...had to go to the store and had to get in one of those electric carts cause i cant walk without pain..maybe its just a flair up but, i was feeling MUCH better before the infusion of remicade..doctor said it was 1then another one after 2 weeks F 34 1 months
1X O
2/21/2010
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 2  ulcerative colitis helped colitis symptoms but am now experiencing what they are calling "remicade induced lupus"? very stiff/painful joints and muscles--Headache, low grade fever some days, Sore throat, stiff, sore neck. Have had problem since October. Some days need help getting dressed and doing simple things. Very frustrated. Have not had an infusion since Dec., but no break in symptoms. stopping infusions due to painful, stiff joints and muscles and other negative side affects. infusions were every 8 weeks. F 48 5 months
not known 1X O
2/8/2010
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 2  Crohn's Disease No real side effects. Have not noticed any improvement, apparently my fistula's are getting smaller, but still have the day to day crohn's symptoms. I have been on Remicade since Aug 2008 and they had doubled my Remicade dosage with no improvement. I think I will be stopping after the next infusion, I gave it almost 18 months and nothing.... M 36 18 months
1/15/2010

 2  crohns disease Have been taking Remicade for over 4 years now. Took swine flu vacine in Late October or early November of 2009. I have broken out with sores all in my hand on the soles of my feet, on my arms legs and now they are appearing in my hair. F 15 4 years
1/4/2010
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 2  Chron's Joint pain, and no stopping the bleeding and diaherra M 75 3 months
11/17/2009
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