• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Remicade debate & questions

So I got the approval from my GI doc to go on remicade. Only problem is I'm having second thoughts about it. The day I got the go ahead, all my crohn's symptoms just had up and left. That day, I didn't mention it cause I was thinking it was just a fluke. But then I went an entire week free of crohn's symptoms but after that, went back to the normal diarrhea/loose stool. I haven't had any crohn's pain in a few months (maybe 2-3) but I just get that signal that the bowels are being evacuated so to say. No real pain but they tend to be random or when I am stressed the most. So I guess you could call them 'painless flares'?

Anyway, I have read all the info on remicade. Does anyone know how much my immune system will be lowered compared to being on azathioprine 50mg a day? I had a really two really bad reactions to azathioprine and will not be trying it again. I see it says chances of lymphoma. How many cases or percentage have actually gotten cancer from this med? I never hear anyone getting cancer from it but its concerning when seeing that in the side effects. Am I gonna be able to do intense exercising while on remicade?


Staff member
New York, USA
It may depend on the dosage - but I have beenon remicade since 2005, and have had relatively few illnesses.....pneumonia a few years ago, and most recently strep 2x this year.....

As for exercising - I was a volunteer firefighter - can't get too much more stressful/exercise when on a call than that - and no adverse effects....I am still in the fire service, but deal more on the stress side than physical side now.....and even then, I don't let the (potential) stress get to me - I treat everyone equally, doesn't matter if they are a secretay, secretary of state, state police or even the governor!.....

As for the cancer risk - doesn't everything carry a risk? I would rather deal with the (slight) potential risk of cancer vs. not being able to live my life as I want to.....
If Mike could go back on Remicade, he would without a second thought. It made him feel like a new healthier man. Unfortunately he cant. I understand your concerns, but I think most people, not all, have positive results after being put on remi infusions.
Good Luck,
Last edited:
I am having the same concerns too. Both my Gis want me on Remicade as soon as I am off pred. I had a CT scan last week and it showed that my small bowel is inflamed despite the pred.

BUT, I have asthma since I was a kid, any lung infection is potentialy deadly for me, I mentioned that to both GIs and both said "Dont worry we will monitore you" I am sure they said the same thing to those who died.

Also I am so scarred of Remicade that I am afraid the anxiety I feel will cancel any good the drug may do.

I went to the official site of the company who is distributing Remicade in Greece and they have Deadly written all over Remicade side effects more times than it appearson the Bleach bottle And I dont drink bleach but they want to shove this thing to my veins.

I even spoke to an immunologist to find out what it will do to my immune system. He admited that we are not sure of the long term side effects and that it will probably mess with my immune system, alot and I will be prone to infections, alot and I will have to have more blood work, which means more poking and pinching and I am tired of it..

Generally and with all respect to the members of the Remi club (I read every comment there) I am FRIGGING scared of Remi. I dont want my GI to come back in 10-15 years saying " you know what? Remember Remicade? Now get a brain tumor for extra bonus, or get a ZERO tolerance to infections", or something similar.

Mostly thats what I am scarred of.

Remicade has not done anything besides improve my life! I have been on it for little over 3 yrs. YOu would think with 2 little kids I would be sick all the time but I am not. I get the occasional cold here and there.
The cancer side effect was very scary but I need the meds to function.
If I am not having problems I get blood work done every 3 months.


Staff member
New York, USA
I too have had very few problems - my husband and daughter have been sick more than I have been.....

I also have asthma - not bad enough to require daily treatment, but every so often it flares - I haven't had to do anything different with that. Even when I had pneumonia - I was still home - probably should have been in the hospital, but my husband was out of town and someone had to take care of our daughter! .....

If I wasn't on it, I probably would have had surgery by now - and would still be dealing with the darned fistulas......

As for the cancer risk, almost everything has that risk, you just need to weigh the benefits vs the risks....who is to say you (generically) won't develop some other type of cancer in the same time frame?

Life is a crap shoot.....do I want to spend the majority of my life dealing with this disease, trying different cocktails of drugs (which who knows what they will do!).....or do I want to be able to live life to the fullest for as long as I can.....I choose the 2nd one....
I was wary, too, of the side effects of Remicade and researched it a bit before starting it, particularly since i have MS, and I didn't want a supreme MS flare to have to deal with alongside the Crohn's.

From what I've read, it seems that risk of infection (flu, pneumonia, etc.) is more likely than some of the other side effects. This risk was more likely if you're receiving cortisteroids alongside Remicade. In one of the studies with people with Crohn's, 10% of the study participants (as opposed to roughly 7% taking the placebo) acquired an infection.

After reading some of the information more closely, I decided for myself that it was time to go on Remicade. I can't handle the abdominal pain, being confined to my home because I want to be close to the bathroom, the 22-40 BMs everyday, the limited food choices...
Hhmm...so once you go into a remission, do they continue to have you take the remicade? I know when I was on imuran, I felt an oncoming fever about everyday.

Does your immune system bounce back after stopping remicade? (If so, how quickly?)
Remicade has to be continued, even if your in remission. If its stopped, you develop antibodies to it, making it a High chance of having a reaction if you start it again. At least thats how I think it works.

Ivd been on remicade every 8 weeks for 4 years. Gaveme my life back!
I was on Remicade but eventually built up antibodies against it. I was on 10 mg/kg. I thought it helped a lot though when I first started it. The hospital # of stays went down. Yes I still had a lot of crohns complications but nothing like before that. As for having a low immune system succeptable to getting colds and the flu, well that has not happened in years. I get random fevers but never colds and the flu, I found it to be strange but great even when I went near some family and friends when they were sick. I cannot even remember the last time I got a cold or flu. I hope I am not jinxing myself by saying it has been a long time lol. Now complications from crohns pleanty :p But it is a great drug if it works for you. You should be on some sort of maintenance therapy. Unfortunately most of the doctors are telling me no more Remi for me.
I'm with Cooro I have refused it for years as I did have a cutaneous lymphomia 13 yrs ago when I was 21. I have been through hell and back with this disease, many side effects from drugs no real relief, I had a baby born premi, most likely due to crohns he died the same day. I have split from my husband, this disease puts strains on marriage, (but I know it musn't have been strong to start with). I have moved to the beach in the hope that a reduced stress lifestyle might be the answer. I absolutely love my new lifestyle and friends and am hoping to be able to work next year. I am due into hospital Friday for my 3rd major surgery for strictures. They say the only answer to remission after is to try remicade. I feel backed into a wall.
As depressing as all this sounds I am a very happy and positive and look forward to renewed energy and enthusiasm for life post surgery but still have that niggling thought regarding remicade. Good luck with your decision.:hippy:
Re: "As for the cancer risk - doesn't everything carry a risk? I would rather deal with the (slight) potential risk of cancer vs. not being able to live my life as I want to....." This is exactly what my loved one said - verbatim; he's not living his life anymore, much less his way. It made sense at the time. He was miserable with terrible pains and frequent goings and went on a combo of Remicade, Imuran, prednisone several months after being diagnosed with Crohn's. We was embarrassed, socially and physically limited, and worse, in pain. While some of his pain receded, a bowel re-section (they took about a foot) was still recommended to get his condition to more than tolerable. I credit that and some major lifestyle changes for ending his misery with Crohn's, yet the doc insisted he keep up with the infusions after the surgery as a follow-up measure/to keep things going well. I was scared to death about the warnings on the patient information sheets from Day 1 - mostly infection risk because I lost someone to sepsis. What happened was different: Approximately 1 year after his first infusion, he was diagnosed with a frontal lobe glioma (brain tumor). They don't know for certain what causes brain tumors or how long they can lie dormant in your brain before they grow and you become symptomatic. However, for a man of about 36 years old at the time, the diagnosis seemed very odd, as did the relative timing of the infusions v. tumor appearance. (It's not uncommon for children or the elderly to get a glioma; his age is unusual.) When I relayed my suspicions about the infusions, the only out of the ordinary exposure he had (cancer is one part exposure, one part predisposition), he said "if it was lymphoma, ok, but its just that and "certain other types" of cancer; brain tumors would have been reported specifically. As I told him, I take two major issue with that assertion: 1. I was put on an FDA-approved drug, Vioxx, for chest pains that was later pulled from the market for giving people heart attacks. Doctors told me it was in my head when I told them I was getting palpitations. 2. His GI doctor never reported his tumor to the FDA for their consideration - and I asked him to. If you don't continue to ask the questions, especially regarding long-term, post FDA-approval effects, how can you have or maintain reliable data long-term? I understand the sentiment of "why suffer" and risk vs. reward, but what I caution is: You can live with Crohn's; its a devil, but its the devil you know. A friend of my stepmother's has Crohn's and a father who is a doctor. "He would never let me go on that (Remicade) without a fight; we had the discussion" she had told me when I asked what he thought of it. She's had Crohn's for decades and has good and bad days (wherein she can't get out of bed). I don't believe for a second though that her father would let her suffer if Remicade were the miracle cure it's sold as. I believe my loved one had Crohn's for at least a decade before I knew him, looking at old photos. He was about 165lbs and rail thin in those photos up to the time of the re-section; about 190 at the time of his death. He looked better; digestion-wise, he felt better (after a minor, post-surgical bowel obstruction). But, again, most of that "better" came after the surgery. Remicade/Imuran were no miracle cures for him and he had to be off the Imuran for months to get the surgery because of his cell counts. Further, you can go into remission with Crohn's. You don't go into remission with a glioma unless you're blessed enough for it to be in a location they can take the whole thing out; highly unlikely, according to the statistics: 75% of patients with gliomas succumb within 12 years of diagnosis - treated or untreated; 50% in the first 5-8yrs. He died within 6 - textbook - and I believe traded a known and uphill battle with a horrid (I do not belittle your circumstances at all, the pain can be debilitating) though livable (meaning you can survive) condition for a small chance of a worse, fatal one, and he lost. It was against the odds, according to the drug company's lit, but it is unrecoverable. I'll be trying to report this to the FDA to see if they will just do some investigation into the instance of gliomas and Remicade/Imuran use. I couldn't do that while he was alive; he had such respect for his doctor. But I feel like its the least I owe him, and you, now.