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7 replies

Remicade Side Effects?

albertagirlalbertagirlMember
I've been taking Remicade for 2+yrs now. To keep the Crohns under control, it works. But I experience a great deal of fatigue and nausea for days (usually 3+) after the treatment.I do not take Benydrl. Generally after the treatment I go to bed and don't get up for 24 hours. Then I get up to shower and that's about all the energy I have for the day. I do get slightly better each day but it's seriously causing me issues with my job. My boss just can't understand why I keep taking this drug if it makes me feel so 'terrible'. Because it's working for Crohns I do not want mess with it by trying something else. Aside from those few days of fatigue I'm doing well.

So.... my question is, to others on Remicade, do you experience this as well? My specialist says that happens to less than 1 in 500 people. I felt like he thought it close to impossible to feel this way.

I feel like I'm the only person who has this problem?
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Jan DollarJan DollarModerator, RN, retired
This sounds like a delayed infusion reaction. I am with your boss. Why continue to put up with this (and risk development of a serious infusion reaction) when there are other options?

I never had Remicade, but have used Enbrel, Humira and Simponi over the past decade, and have not experienced what you are going through.

Jan Smiler
S ShainyMember
I took remicade first time for just over a year. I felt a bit more tired than usual the day i had an infusion but not much else.

becaues i was doing well (UC in remission) they took me off remicade

i had another infusion in december last year after an uncontrollable flare and instantly had a bad reaction so that was that. surgery.....
albertagirlalbertagirlMember
That's the thing Jan. I'm afraid to switch to anything else. It took me about 17 years to finally have my health back. I guess 3-4 days of being bed ridden is the price I have to pay for having 50+ days of wellness. The Dr. did say that if I go off of Remicade, I can not go back on due to antibody built up? I can't take the risk that another biologics will work. If it doesn't I'm hooped.

I wasn't asking the forum users for a 'solution', rather asking if they experience anything similar. I guess I'm questioning the 1/500 people experience this. I just can't believe that number. But maybe it's true. Like I won a lotto! NOT a good lotto of course!
mgmt10mgmt10Member
When I was on Remicade I used to feel extremely fatigued after an infusion. I would sleep for an entire day and then it would gradually get better over the course of 3 days. So I know how you feel. My mom is on Remicade for her RA and she gets the same way....granted she's 82. But she's always wiped out after an infusion and bounces back in a day or two.

Not sure I believe your dr.'s 1/500 people statement. I have been reading long enough on the UC forums to know many, many people have fatigue after a Remi infusion. So it's not just you!
Jan DollarJan DollarModerator, RN, retired
You do have a point there. It used to be that you absolutely could not go back to Remicade after a hiatus because of antibody formation, but that has sort of fallen by the wayside, as many people have been able to resume it. But, in your case, I would suspect that you already have some antibodies formed, and that is the reason you react. So, you probably could not resume it later. I imagine, sooner or later, it will escalate.

But, as long as you are willing to deal with it, that certainly is your choice, and you may as well ride along until something pushes you in another direction. I know many people have switched to other biologics successfully, but some do not get the same success as they had with Remicade. I still think it might be a good idea to call the Remicade support line to see what suggestions they might have to help stave off or shorten your reaction.

Jan Smiler

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