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For those on remicade or who have taken remicade

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Crohn's Disease
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Posted 9/13/2007 10:30 PM (GMT 0)
what side effects did you experience?

for those who couldnt continue infusions...what symptoms/side effects did you have? was it an allergic reaction?

Posted 9/14/2007 12:07 AM (GMT 0)
i was on remicade for a little over a year, i never had any side effects or reactions too it, even when they uped the dosage. Eventually, it stopped working for me and i had to start taking Humira which is similar.
Posted 9/14/2007 12:09 AM (GMT 0)
I had absolutely zero side effects until we had to double my dose, and I had a lupus like reaction. Basically, I had a rash on my forearms, severe joint pain, and tingling in my hands. Do you think you've had a reaction?
Posted 9/14/2007 1:58 AM (GMT 0)
I did the 3 loading does and then developed the lupus like syndrome- really achy joints, rash on my face. I also developed itching all over my body, which we think was an allergic reaction. Good news was that it really helped the CD. All of the symptoms have gone away in the 7 weeks since I took the last infusion. My doctor is switching me over to Humira and hoping I don't have a reaction.
Posted 9/14/2007 5:34 AM (GMT 0)
Only side effect I had was hair loss. It wasn't noticeable but lots came out when I shampooed or brushed my hair. That cleared up a few months after I was off it.

I did eventually develop antibodies to it and we had to change to Humira. I was on it 2.5 years. Never reacted or had issues (nor took premeds!) until I slowly started to go into a major flare even with the Remicade. At a regular infusion, I suddenly started to react - my throat started to swell, couldn't breathe, heartrate went up, I turned red, etc. We got through the infusion by slowing it and taking Benadryl. I tossed it off as a fluke.

4 weeks later, I was admitted to the hospital for a major flare. Given Remicade the first day there and reacted again.

GI concluded I had built antibodies to it which was 1) causing it to no longer work (thus the flare) and 2) caused a reaction.

So we gave up and moved to Humira.
Posted 9/14/2007 8:59 AM (GMT 0)
my experience with remicade was similar to danielle's. it worked fine, no side-effects that i noticed (though on the day of the infusion i was pretty worn out), but over time it just slowly stopped working. eventually, it got to the point where i would have been working full-time to pay for my treatment and nothing else, so we stopped it and i began my long and painful journey of getting sick enough to enter a clinical trial of humira, which resulted in the loss of my job. but the drug is working and i didn't like work anyway, so its all good. except now i have to get another job :/
Posted 9/14/2007 10:23 AM (GMT 0)
Hi, Songstress,
I have be on Remicade for over 2 years and I have no-side effects. I think its a wonderful
drug.
TBW
Posted 9/14/2007 12:30 PM (GMT 0)
well I was on it over 2 yrs ago and no side effects this time around Im having issues

Ive got fever, blurred vision, sores all in my mouth, weak, tired, sore throat, shortness of breath. I had the infusion on monday so Im curious when these will go away
Posted 9/14/2007 12:38 PM (GMT 0)
Very, very painful joints caused by serum sickness. I had had a delayed reaction (shortness of breath, pain in joints, slight fever, 5-14 days after an infusion) when I first started the drug, but it was controlled with the 6MP and steroids and antihistamines. Then one of my doctors decided to take me off the 6MP and I started having severe joint pain. It took months to stop the pain after I stopped the infusions.

Unfortunately, the infusions and/or the 6MP were really helping. I ended up having to have surgery.
Posted 9/14/2007 1:11 PM (GMT 0)
i've been on remicade for over a year. for the past several months i have been seeing a foot doctor due to a horrific rash on my feet (the skin looked like aligator skin). i could peel the skin off; it had a terrible itch and once i'd soak my feet the skin would peel off easily but the next day the skin would look raw and have a burning pain. it eventually spread to my arms and palms of my hands. after treatment from the foot doctor failed after a few months, my gastro finally concluded that it was a side effect from the remicade. he suggested i see a dermatologist. i saw another gastro yesterday for a 2nd opionion, and he recommended since the remicade has not improved my condition in over a year, that i should discontinue the remicade treatments.
Posted 9/14/2007 2:19 PM (GMT 0)
I just had my 3rd infusion yesterday. I have had reactions all 3 times, but they are always ready with the extra benedryl. I get tylenol, benedryl and hydrocortisone. Yesterday they gave me the benedryl and hydrocortisone IV push! That made me feel a bit "messed up" for a few minutes. I started having chest discomfort and difficulty breathing about 30 minutes after they hung the remicade, so they stopped it and administered more benedryl and then they started it again. They only run mine at 50 ml/hr, so it takes me about 7 hours if you include the stopping in the middle. I think it may actually be starting to work, though, since I have had a day here and there with no diarrhea! It typically makes me feel really tired for a few days afterwards, and sometimes I get flushing and nausea. These are side effects that can happen, but they don't include it in the patient pamphlet on the drug (at least not in mine), so i just look it up in my nursing drug guide and it tells you the most common side effects in italics.

Good luck!
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