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[seanm]

Hi,

My name is Sean and I am 21 years old. I was diagnosed at 13 with Crohn's Disease. After I didnt' respond to Asacol and Imuran I started Remicade. I did three infusions at 6 weeks apart and that put it into remission so I did not take any medication for a year and a half while I was symptom free. However at 15, the symptoms started to come back so I started the Remicade infusions again but this time I had reactions to it. A few days after the first infusion I had severe joint pain that lasted for days where I couldn't even move (at the time I didn't know it was Remicade related). When I went in 6 weeks later to get the second infusion, a reaction happened 10 minutes in and they had to stop the infusin immediately and take counter measures to stop the reaction. It felt like I couldn't breath and my blood pressure and heart rate sky rocketed. Luckily I was able to go back in a week later and complete the second infusion. Ever since then I have been getting maintenance infusions of Remicade every 10 weeks for the last 6 years and have been symptom free. My concern is now, when does it stop? I can't stop and then restart the Remicade again due to the reaction I had. And nobody seems to know whether or not staying on this 10 week regiment permanently is a safe and viable option or not. The decision is pretty much in my hands (BTW my GI sucks, I never see him when I go in for a visit, I only see his physician's assistant. Working on switching doctors). Where should I go from here?

 

[TR45]

Hey Sean. I'm 21 as well but I don't have crohns
I have ulcerative colitis.
Im sorry to say i dont have any info on what you should do
I just wanted to wish you the best of luck

 

[glum chump]

Hi Sean:

Welcome to the forum. I was on Remicade for a while and had the same reactions as you (couldn't breathe, etc.), but the difference was that Remicade stopped working for me so I stopped taking it.

I'm not sure how to precisely answer your question---I'm not sure whether there has been any longtitudinal studies done on the safety of Remicade over a longer period of time. I understand your concerns given some of the side effects, but as you say, building up antibody resistance when you go of it is also a risk should you require Remicade in the future.

I would suggest going to the 'Treatment' section of the forum and posting your questions on the 'Remicade' subforum---there's tons of good information on there and people who may be able to answer your question.

Again, welcome to the forum!

Regards,

Kismet

 

[xJillx]

Hi Sean and welcome! I am so happy to hear Remicade is working for you again! Honestly, usually when people stop taking it, they build up immunity and it no longer is effective. So, if it is working for you, stick with it. Actually, some people on the forum have taken it for years and higher doses/shorter intervals.

Of course, only you can make the decision of what is right for you. There are some scary side effects to think about, but keep in mind what can happen if you stop taking it and Remicade doesn't work for you again? It is something to think about. It does sound like you need a new doctor (I can’t believe you only see an assistant), and this would be a good topic to discuss.

 

[Jenifriend]

Had the same reaction and now I'm not sure if I should try again! They are going to do premeds first but the whole thing was really scary.