Remicade side effects

After taking remicade for appx. a year, I started having heart problems, A fib, ending up having heart surgery, a kidney has collapsed, and had a lesion appear which was squamous cell carcinoma. All these problems developed have taking remicade; I do blame it for my problems. My Dr. treated me for ankylosing spondylitis, a form of RA. After so many problems, another Dr. told me that I did NOT have AS. And it did not help my pain at all. This is a troubling experience for me, and has been the worst thing that ever happened to me.

Good Evening,

My mother has been taking Remicade for several years now. I believe 4 years.
She has ankylosing Spondylitis. Nasty nasty disease. The drug has worked like a charm so far. Aside from the temporary side effects during the first few hours of injection - tiredness, drowsy, etc.

After that, shes as good as a goat.

Recently, shes been experiencing a loss of recent recent, very recent memories. Sometimes a convo here she wont remember or take a while to remember.
Or convo yesterday she wont remember at all. Also her ability to compute math problems in her head on the spot has decreased. She has a hard time doing any simple math. She was never like this.

Being in the medical field, her wit and brain power were her key features. Now that have dwindled, shes having difficulties coping with her loss.

Shes been tested for Dimentia and other ailments when reaching the age of 51. So far, soo good. No such things.

I would like to know, if this side-effect ( if i can call it that) is permanent or temporary

Her doctor in charge of her dosages has reduced her treatment volume to fewer ml and will prolly resort to other meds as well.

See how it fairs in the months to come

If anyone has any cases similar to this. Please relate and re-iterate!

God-bless!

Well, I have had 4 infusions for Ulcerative Colitis. I have had several side effects but none that seem to serious....I don't think. Anyway, I keep having problems with my ankles after each infusion. Once they swelled up and a large red spot appeared and I was unable to walk on it for 24 hours then the swelling went down and a week late it happened to the other ankle. The next infusion a blood vessel in my ankle swelled so large I thought it would bust I elevated it and that helped. Then swelling went down after a few hours but the area turned black and blue and took a week to go away. Now I have a cough and sour throat..... so I really don't know. I go for my next infusion the end of Sept. We'll see what happens then.

I have no idea if these are side effects from Remicade or not- because doctors always dismiss it as "probably just you". Definitely HEADACHES. I would occasionally get headaches before, but since being on Remicade the past year, I get really bad headaches. Neck/scapula pain/strain. I have woken up with immobile neck 3 times now in past 2 months. It's getting ridiculous. The doctors just say I need PT or to stretch. But I really wonder what's up and why I've never had that in my life until now. Also flushing with inital infusion, but that really is no biggie. I definitely feel STUPID. I've heard of "chemo brain"- does the same thing happen with Remicade?
I am 31 and taking this for inflammatory condition NOS. I have an autoimmune/inflammatory eye condition NOS that left me with significant Retinopathy. I did Prednisone, Methotrexate, Humira, Cyclosporine, Tacrolimus, Cellcept all for a few years- and nothing helped except steroids. Which obviously you shouldn't take long-term. Plus I HATE them, they make me fat, hairy and psycho! So Remicade has been a god-send in some ways. But I am a mother of 2 and love my husband, and worry that I may not go blind but will die young from side effects of this medicine. But why should I worry? Every health care professional says there are "NO" side effects. What's the deal?

im just a kid. ive had 4 remicade infusions for chrones disease. and i have a terrible headache on the lower middle section of the left side of my head that spread to my left eyeball. has anyone else had these problems with remicade? or are my sleeping habits giving me these.

My 14 yo son has UC, he has had 2 infusions and now the MD wants to try to go without it and stay on Lialda only. Which sounds great, but for the past 2 days he has had a severe headache and fever, wanted to know if this is related or not its been 7 weeks since last infusion.

Remicade has been a huge help for my RA. Have significantly reduced symptoms, am much more mobile a have almost no pain. However, I am experiencing a side effect that my ENT says is a result of the Remicade. Have overly active mucous membranes in my mouth, so secrete a great deal of mucous - very salty tasting and usually thicker than saliva. As a result, I also secrete a lot of saliva. According to my ENT, there is a natural balance between mucous and saliva, and when excess mucous is secreted, the body tries to maintain the balance. It is extremely annoying and frustrating. ENT says that it is a side effect of all TNF inhibitors (e.g., Embril, Humera). He says that it is not published anywhere, and not listed in drug literature. Also, it is rare enough that rheumatologists are not aware of it since they don't see that many patients with symptoms. However, he says that he sees many patients in his ENT practice. Am wondering if anyone else is seeing these side effects? If so, is there anything you can do about it short of going off the drug?

My husband has been on remicade since Sept, 2008. He started having what we thought were mini-strokes and had a major one on May 25th, Memorial Day. He was given a clot buster because all along we thought he was having a stroke. After have a specialist examine him, we learned he did not have a stroke but is having seizures and it is medicine related. We are not sure if it is the remicade of some other medicine he is taking for his Crohns. His doctor and another doctor told us they had not heard of Remicade causing seizures but it is listed as one of the side effects - has anyone every had this side effect or know anyone that has - this scared us beyond belief. His doctor is contacting the makers of Remicade but who knows if they will respond. Please let me know!!

The fatigue seems to be the worst. I never knew about the short-term memory problems, I can't remember things in a conversation and actually went to psychologist to see what was wrong. I've been on remicade about 2 years, never had such fatigue or memory loss before. The remicade did make a tremendous difference in the two fistulas clearing them up. But my life is not like it was before. I would like to get off the remicade, but can anyone tell me how?

R.36426

I recently had a bad reaction to Benadryl also. I have been taking Remicade for over a year now which has been a miracle for my Crohns. Last week after the benadryl went into the IV I started having a really bad reaction. First, I felt restless and twitchy, then I felt like all my muscles were numb and I had to stretch everywhere. I had to stand because my hips and back hurt so much. It was scary to me and I know I freaked out the other Remicade patient. My husband rushed a hydrocodone to me for the pain and it also helped me feel less restless. Next time we will half the Benadryl and take a hydrocodone to begin with.

I was on remicade for 2 months and contracted pneumonia. It kept getting worse for 8 weeks until I had to go hospital. None of the antibiotics were working. I almost was dead and they considered a heart and lung transplant and I was on a respirator in a coma. Finally somebody figured out I had eosinophilic pneumonia and treated it with cortisone. I began to improve but was still in hospital 4 months and after almost 2 years I'm still on oxygen and can't walk right. Many people develop this and die without a diagnosis. I won't take remicade ever again.

Reading all this horrifies me since I have been on Remicade for almost 4 years for Crohn's and a still unidentified Inflammatory arthritis of some kind. I will pray for you all. But, on another note and by no means an attempt to diminish the severity of each account in this blog, I have had no such side effects and for the most part have had great success until recently. My Crohn's is and has been in complete remission since the beginning of the infusions. However, I have had increasing inflammatory issues in joints between infusions. I get 5 vials and they give me Solumedrol in the IV. I ended up in the ER last night because my joints were all frozen up and it was just unbearable. They gave me Solumedrol and Morphine, and I am 75% better today. The frequency and severity of the arthritis issues has gotten increasingly worse over the last 6-8 months. I get infusions every 8 weeks, and start to have severe joint pain after about 4 weeks. All that being said, it is appearing like Remicade is still working brilliantly for Crohn's but is having little to no effect on the inflammatory arthritis. The steroid they give during the infusion is what I think is doing the job for the joint pain since I was a 10 last night in the ER, and I am 3 this morning pain wise after getting the steroid. My case is unique and frustrating to the Rheumy b/c my sed rates and RA factures and C-Reactives are all relatively normal when I am in tremendous pain. So, they just ran alternate tests the other day to look into things like Myeloma and so on. I don't believe that Remicade has done any of this. I believe that Remicade's benefits for MOST people greatly outweigh the risks, especially when you are incapacitated with Crohn's etc. But in my case, it just does not seem to be working for my joint inflammation.

I have had 2 Remicade infusions - (I'm also taking prednisone) for colitis - I have come down with a bad lung infection that has been going for at least three weeks, I've had to delay my next remicade-- not sure if it is the cause or what. Has anyone had this? Can I continue with the Remicade - because it has greatly help my colitis.

I have been on remicade for 4 years. I never had any allergies until 6 months ago. I don"t have reaction to remicade it self but is it possible that remicade is creating all of this reactions to other drugs. First it was benadryl. I was given benadryl prior to remicade until 6 months ago after I got benadryl developed tremors, tachycardia and feeling very dizzy. All this prior to remicade infusion. I was treated with solucortef and IV fluids and it went away. 2months later I restarted taking paxil. 5 days into it, same symptoms but more severe and I ended in hospital. Lasted for about 5 hours. 2 months after that I took valtrex that I take as needed. Same thing. K dur 10 meq caused severe diarrhea. I am to the point that I am afraid to take any medication in fear of reaction. Could all this be caused by remicade. If I stop will it go away. Any suggestions?

Has anyone experienced multiple pulmonary emboli (blood clots in the lungs)?

extreme foot pain!!!

Persistent cough again this winter...last winter I coughed for 8 weeks straight.
antibiotics don't help either. --B.P.

My mother is 40 yrs old and has RA and gets remicade treatments through an iv . It seems to help with the pain of her RA, but the side affects are out of control!!!! she has white puss pockets that show up on her hands and feet. She was told that that was her white blood cells dieing from the treatment. her hands and feet peel and swell making it hard for her to walk or touch anything. her throat has these awful spasms that make it hard for her to eat or drink anything. Theres so much more, it would take all day to explain! Is this really the price she must pay for RA relief??????

Just got home from hospital. they drained a liter of fluid off my heart. I have been off remicade for almost a year now. I have posted many side affects on this list. I had to take drastic measures to get off Remicade. The sack around my heart had grown thick due to the pressure it was under. My many other side effects including soreness that moved all over my body and almost every other one I see listed here seem to be enough to pull this drug. I wish someone would take this serious. I need help with getting this info into my lawyers hands. because one week ago the doctors told me I was lucky to get the surgery I got. He said I was hours away from Death. Some of my side effects have got better but I still suffer from taking this drug. Don't be fooled by the short relief this drug can give. I was on it for 4 years. never again

Yes, at my second Remicade infusion, I got a stiff neck and severe pain, like a pinched nerve around cervical 4. The pain radiates down my right arm. It hurts 24/7. I also got this when I took Cipro! Today is my 3rd infusion and the pain is still there. The doctor says it is just arthritis, but this is not arthritis. It is a Remicade side effect. Analgesics so not help the pain.

I have been put through the wringer with Crohn's. 15 surgeries, all of my terminal ileum removed, 1/3 of my large bowel removed, etc., etc,- Those with sever Crohn's know.

I spent years on high doses of Prednisone, Imuran, Sulfasizine and other drugs and nothing worked.

I was even retired from the US Air Force due to its severity.

Remicade has help tremendously. However, some of the side effects listed above, I have also been through. Some of them, have been explained through other factors and those attributed to the Remicade I take other meds to offset them.

For example, Head aches. I figured the head aches were from allergies that I have had for some time. I attributed some of the headaches to the Remicade. The head aches are very sever after my infusions and decrease to a dull roar after that. I take four aspirin and Sudifed PE and this leaves me with a dull roar shortly after the infusions and does away with them till the next infusion - perhaps this will help some of you.

The muscle soreness is horrible and I take aspirin or Tylenol, but that barely takes the edge off.

I started get those little red dots. Then the dots turn to blisters. I get these on my hands, feet and scalp. My GI Doctor said it wasn't the Remicade, but a Dermatologist showed me a recent article that should Remicade could cause Psoriasis. I take Clobetasol Propionate for these and it has cleared them up.

I took the Remicade years ago and then it was stopped - it was the way it was done then - not constant, just three doses spread out over three months.

I got the tingling fingers during those. A neurologist attributed it to the Steroids I had been on. The nerve damage is permanent.

A few years later, they started the infusions again and I experienced no muscle soreness, headaches, etc. and it did not help the Crohn's as it had before. When I talked to my GI doctor he showed me a study that people build anti-bodies to the Remicade over time. They doubled the dose and it started working again. For those who are experiencing the Remicade not working - perhaps this is what has happened to you.

I get the mood swings, but had never considered it might be the Remicade. I will talk to my doctor about this one.

I have the blood pressure decrease during my infusions, but it has not been sever.

More recently, my joints have begun to ache and initially the Remicade had helped to stop the minor joint pains I already had. Come to find out, I have had bone thinning due to the Crohn's.

The one symptom I have started getting this week is random, sever pain in odd locations - not joints.. They have been deep and feel like they are in the bone. One midway up on my shine, one midway down on my foreman and one in my right thumb. Has anyone experienced this. The pain has been horrible and it does scare me.

I also suffer from depression, but have had it for years prior to the Remicade treatments.

after my first remicade treatment i developed a slight but constant headache,flushing

horrible . uveitis , shakes , balance off , , .muscle stiffness and pain. heart pain tremors .the tremors really hurt. went to emerg for shortness of breath many times . ive been off it for 4 yrs and still hurts just as much . how long does it take?

My name is Alex, this is a 7 years since I have been on Remicade, The Remicade works well for me .
The only side effect from remicade I feel like I am not myself and I don't feel like do anything, and I don't perform good at my work, I don't like to think to deep or details work. My job is computer.
I get tired of things so easy.
Overall I am not happy person when I do my remicate.
Dose Anybody has these problem I mentioned????

I had my 4th infusion about 10 days ago and had a really bad reaction. I had just started the infusion when I felt uncomfortable cramping in my upper left arm then the pressure in my chest started. The nursing staff noticed right away and called the doctor who ordered them to stop the infusion. Just as they gave me a shot of benadryl to help control the bad reaction, I started to shake and pass out. Since that time, I've had terrible headaches and a very painful stiff neck. So painful that I haven't been able to sleep. It has been 10 days and I'm still experiencing the stiff painful neck and terrible headaches. I won't ever take this again. I'd rather suffer with the affects of RA than with these horrible headaches.

I have had 5 Remicade IV's. I have severe Psoriasis as shown on my photo of one leg. I have had no side affects that I can pinpoint. I now have a resp infection and sinus and cough it scares me that it may be Remicade. I would hate it my legs are completely clear. I was depressed before and would not go out in public. What do any of you think. It could just be a cold.

I have had 5 treatments of Remicade and no side affects yet. But I seen the ad on TV and it scared me so I have been reading all this stuff everyone as sent in. I have a cough, runny nose, eyes matter, and sometimes shortness of breath. Can anyone tell me what they think. I take it for Psoriasis and it has completely healed. I felt like a freak before. I really want to keep taking it.

My mom had Crohn's & just passed away at the age of 44. My mom died from a enlarged heart in which was due to taking Remicade for many years. We started getting stuff in the mail about all the side effects & worst things that could happen. Well it happened all the WORST things you could think of. IF YOU LOVE SOMEONE TAKING THIS MEDICAN let them know what it does !! I'm getting married in October, & my mother will not be there, due to DEATH FROM REMICADE !!

Good Luck to those on it, & try to get off !!

a full week after my first remicade treatment, i suddenly developed a very severe headache, followed by a stiff neck, a stiff left arm, a sore jaw where i couldn't open my mouth very far and i could not chew, then developed a fever, chills and itching. It came on fast but also subsided a good bit within about 12 hours. has anyone else experienced something like this, a full week after a treatment?

Remicade has totally changed my life. I could barely walk due to ankylosing spondylitis and I also suffered from severe ulcerative colitis. I still have pain, but nothing like it was 10 years ago. The ulcerative colitis has been in remission since my first infusion. If I die from taking Remicade tomorrow, I will be die happy. I was ready to die when I started the infusions!

Centocor, the maker of Remicade, aggressively pushed physicians to set up infusion clinics, write for the drug and promised huge profits.Most of these infusion suites are run by nurses. The drug dose is calculated by a nurse and mixed into the iv bag by a nurse NOT A PHARMACIST. The drug, which can put patients at risk for serious infections and tuberculosis is not even mixed in a sterile IV hood !!! It is mixed out in the open air and exposed to contamination. In the meantime,Centocor downplayed the severity of the side effects. This drug actually caused LUPUS in a patient who subsequently won $19,000,000 in a lawsuit. The drug can greatly increase the risk of lymphomas and blood disorders with fatal outcomes. But the literature does not adequately educate patients and physicians on how to properly monitor the drug! The drug can cause memory problems, visual changes, and increased sed rate and increased c-reactiv protein.

REMICADE IS DEADLY and the Cenjtcor downplays the severe side effects that normal blood work will not pick up. The drug causes and increased risk of lymphoma. WHY AREN'T THEY URGING PATIENTS TO GET A BASELINE BONE MARROW BIOPSY!!!! MARK MY WORDS...PEOPLE ARE GOING TO BE DROPPING LIKE FLYS WITH CANCERS FROM THIS TOXIC DRUG!!!!!

The arthritis/crohn’s disease drug Remicade, manufactured by Centocor is a deadly drug and should be taken off the market. The drug has caused death and permanent damage to patients across the world. The drug company makes billions of dollars and downplays the side effects including the increased risk of lymphoma and blood problems. The company downplays infusion-related reactions saying that those reactions usually occur within 1-2 hours post infusion. Here’s the truth:

*Centocor has been reprimanded by the FDA for publishing false claims in its marketing literature given to physicians. See FDA website for official document.

*The literature lists syncope (drop in blood pressure), bradycardia (slowed heartrate), pancytopenia (dangerous drop in blood cells..platelets, whit blood cells, red blood cells etc, increased risk of lymphoma, serum sickness. The literature says to call MD if you are “pale”.

*Here is a case of what happened to a woman in her 30’s with rheumatoid arthritis after only the 2nd infusion. She was not on methotrexate at all so this is all Remicade’s fault. Approximately 2-3 days after the 2nd infusion the patient began to feel tired and sore but still worked an 8 hour shift that day. By 12 midnight the patient’s entire body flared up…every joint was literally swollen and she was vomiting violently.. She could barely get to a phone to call for help. Her blood pressure dropped to 50/40 and all of her blood counts plummeted. Her Sedimentation Rate (which measures inflammation had always been below 2 and it spiked to 29!!!) Remicade caused the opposite of what it was supposed to do. It also increased greatly her C-Reactive Protein which is also a measurement of inflammation and can cause cardiac inflammatory processes as well increasing the risk of cardiac damage. The nurse in the triage area told the patient that if she had not called for help SHE WOULD HAVE DIED !!! She ended up in the hospital for 5 days in an isolation room. She was in excruciating pain and had to be given Oxycontin every 12 hours and Dilaudid IV every 2 hours to control the pain. For the first 2-3 days she could not even walk or go to the bathroom without assistance. She was given high doses of prednisone to decrease the inflammatory process and get her pain under control. A hematologist performed a bone marrow biopsy which revealed an abnormal population of plasma cells that can develop into myeloma or lymphoma. The hematologist said that the patient would have to be monitored lifelong to watch the pre-cancerous cells. The patient was out of work for 3 months and was forced to change jobs because of her fatigue level and short term memory problems. She also suffered post-traumatic stress due to her near-death experience and total upheaval in her life. She is a healthcare professional. Even 4 years after the reaction her blood counts are still abnormal and she has still had short term memory problems and vision problems.

I have been on it for two months due to severe psoriatic arthritis. I'm taking the max infusions every four weeks, methotrexate injections and prednisone. I'm tired, sleepy, sweaty and somewhat nuts a lot. However, after last week infusion, I have some type of rash-little red dots that feel like pin pricks that itch somewhat. I feel like a thousand fleas are attacking me all at one time! Has anyone had this type of feeling? PLEASE reply-it is driving me nuts.

After 2 years on Remicade I slowly developed SEVERE JOINT PAIN all over my body, including my jaw. It's so bad I can't walk and do simple tasks. I have not been on any other meds.

The only thing that cures the pain and allows me to go back to work is another infusion. It's like CRACK.

Now the DR. has scheduled my infusions closer together and the pain just comes on sooner, like the medicine doesn't last as long.

I want to stop treatment in the worst way but I have been reading that the side effects do not go away - even after treatment has stopped.

Has anybody here discontinued their infusions???? Please help!

I have been on remicade for 3 1/2 years or so and it worked great for a while I have severe crohns disease . but recently I am having severe joint pain and don't feel like it working anymore? has anyone else have this problem? the pain causes me to miss work and now seem to be having stomach pain just feel bad ?????

I have had 1 remicade infusion so far for ulcerative colitis. The next day a bunch of spots appeared on my lower legs. There were 30-40 of them, small, roundish, purple/dark red. They looked like blood spots under the skin.
It wasn't a rash and they didn't itch or hurt. My doc had no explanation, and I haven't heard of anyone else having this reaction. They checked my blood for a clotting problem and didn't find anything. The spots faded away over a week or so. My next infusion is in 2 days, so we'll see if they reappear.
I have also been experiencing a weird kind of insomnia where I am so physically antsy I CANNOT keep lying still, I have to shake my body or kick my legs or something. I read up on restless legs syndrome and the symptoms sure sound like what I am experiencing. I don't know if it's connected to the Remicade - I read that iron deficiency can also cause it and I am anemic due to the UC. But since Remicade can disturb the central nervous syndrome, it seems possible. Anyone else experience RLS with Remicade?

My son has side effect following third infusing...headache, acne like pimples, rash, mood swings, lose of short term memory, frequent urination, stomach spasms, and over all total body ache...now six weeks after last infusion...seeing two dermatologists, his regular doctor, and having to take a two week leave from work...my son finally showing improvement..his gastro Dr. wants him to go on with treatments of remicade...No, No, No...

Now a new side effect, I have posted other side effects that were enough to get off the remicade. I went in and had another surgery because the side effects of this drug was killing me.{see other effects I posted under Jbill} So now the Doctors are looking into Brain damage. I am going to have a MRI done to see if this is a reality, I feel as though I have lost my wits. this is not something that I came up with, it is starting to show up in others and is talked about among the doctors that treat us. I used remicade for approx 4 years and feel like it is a dangerous drug. It can work pretty good but would not take it on a regular basis. I will not take it again.

i will have my first treatment remicade this coming may28 2008,tell me if its a good idea????

tony k.

I'm on my third infusion. Up till recently? It was a wonder drug. I got all my energy back, no more random joint pain and everything was going great. Then my third infusion happened. And I get jimmy arm. It's like jimmy leg, where you can't stop it from bouncing. Only worse. It's like my arm just won't rest. The next night? Both arms. The night after? Chest pains, racing heart, breathing shortness, all kicked off at 3AM with a lack of sleep. This is all very new to me and I'm waiting to hear from my Rheumatologist if I should go to the hospital or not.

Hello, my name is Rob and I have been on Remicade for the past 5 years. I had a reaction to my first Infusion, shortness of breath and feeling flushed. They then added Benadryl to all future infusions and everything has been fine until this last infusion in April of 2008. Halfway into the infusion my face became flushed, the person adminisitering the Remicade said it was hives, this was accompanied by tightness in the chest and headache. They stopped the infusion, gave me some Benadryl added to the IV, that did not work, they then added Solu-Medrol 125MG into the IV and it seemed to reduce the effects of my reaction. The infusion was completed and I went home. Upon arriving home I looked quite pale until that night. My face became red, almost as if I spent too much time in the sun and I have had a headache followed by chest pains. This condition has continued into the next day but it does not feel severe enough to go to Emergency. Should I be concerned or will this pass? Is it possible that I have been on it so long that I am now building up a tolerance to it?

off it 4 yrs still havin problems . blurry vision ,chest pains , achey muscles ( like fibromyalgia ) very painful . lost my vision 5-6 times the first two yrs .

I had my first infusion of remicade with the benadryl on Tuesday since then I have had a very bad headache, stemming from the back of neck all the way over my left side to my eye and also a very painful stiff neck. I am literally inches away from surgery to remove my large intestine and this was my last chance. The good news is that it seems to be working for the UC but I am not sure I want to live with these headaches it is awful.

My experience with Remicade has not been good. On one hand it did help with the crohns. On the other I developed weakness and tingling in my arms and legs, joint pain, ankle swelling, I have difficulty walking now. I also have numbness on the side of my face and occasional sharp chest pain. I find I am very depressed. I'm at my wits end. It is horrible bing in constant pain. I'm thinking of just going it alone without any medical help. I was better off as a 117 pound, 5-'9" lady with only crohns to worry about. Sure swallowing anything felt like glass but it beats this.

I have been taking Remicade for years. At first it was getting the job done. I started having severe pain that seemed to migrate to different places in my body. Sometimes the bottom of my feet would get so tender I could barely walk. My finger would bend while sleeping and I could not straighten it for days and it would hurt real bad. Knees and ankles would do the same things and then move onto other parts of my body. I thought it was more of a tendon problem, but the pain could also be in any random spots on my body, like shins or maybe a random place on my back. My wrists seem to be a favorite place too. The pain can set in fast and sometimes leave fast. Prednisone is the only thing that seems to help these symptoms. I have been taking 5mg a day for years and when I am having problems that is not enough. I went to a Rheumatologist and he says it is not the Remicade but another antimmune problem. My family doctor thinks it is a side affect of the Remicade and I tend to agree with him. I am going to have my damaged pouch removed in hopes of getting off all medications. I have been living with a colostomy bag for the past three years and it is the least of my problems. Before that I had all my large intestines removed and a pouch which worked well for approx 15 years. I am one of the early people to receive that kind of surgery. I can only pray for all of you that are suffering and lend hopeful advise to your journey.

I have had one infusion of Remicade, and I had a headache and dizziness only the first day.But my Hemoglobin dropped to 74 which is critical low, is this common or what??

Remicade did wonders for me, my Crohn's disease went into remission. Still have muscle pain over a year after not taking it. Maybe that is from the Imuran. When I had my infusions I had to have Prednisone before & during because of an allergic reaction.

Remicade did wonders for me, my Crohns went into remission. Still have muscle pain over a year after not taking it. Maybe that is from the Imuran. When I had my infusions I had to have Prednisone before & during because of an allergic reaction.

Terrible headaches after infusion two. The headaches are intense and in the back of my head. They actually cause my neck to stiffen. They are also accompanied by blurry vision and double vision-especially at night. I'm wondering if these side effects will go away or if they will continue as long as I'm receiving Remicade treatments.