Just wanted to throw my two cents in. I had 10 Remicade treatments over about a year and it worked almost immediately for me. No more pain! It also allowed me to completely come off of Prednisone and just take Pentasa. I did develop a scary allergic reaction that required Benedryl during the IV treatments, but that wasn't enough for me to consider stopping. Even though I felt "cured" my doctor and I agreed that I would stay on it indefinitely.
However, I've been trying to get pregnant for over a year now and to my surprise, after letting my GI know that I was pregnant in Sept. '06, he told me to stop the Remicade. I was surprised because he's very conservative and doesn't want to change what is working.
Unfortunately I miscarried at six weeks and was able to keep my Remicade schedule going. I became pregnant again this July and he again told me to stop - I again miscarried, this time after nine weeks so I would have to go through the induction phase again and since I was now pursuing fertility treatments (I'm 37) he told me to stop Remicade until further notice.
It's funny, because from everything I've read (including on this forum) and heard from my Rheumatologist who treats pregnant Crohn's patients occasionally, I was fully prepared to continue my Remicade. Maybe his decision had to do with the miscarriages or maybe it had to do with the fact that I'd been in symptomatic remission for so long (although an endoscopy still showed inflammation, but it hadn't spread).
I've now been without Remicade since May 2007 and fortunately, the pain (my main symptom) hasn't returned. I have been plagued with recurring urinary tract infections (a lingering side effect of Remicade?) and this mystery skin rash that I'm trying to get dx'd, but otherwise feeling good.
So, I'm not advocating getting off of Remicade - if I weren't actively trying to get pregnant (and that window's closing here in a few years) I would still be on it. And I hope to get back on it eventually, I just wanted to let you know that if you're even symptomatically under control for a long time - which it sounds like you are - things don't necessarily fall apart when you stop Remicade.
I guess my fear is the unknown of side effects down the road... after 5, 10, 15 years of remicade, will i be dealing with complications from this drug?
(and i did have a successful pregnancy with remicade!)
There certainly is a higher risk of lymphoma as a result of Remicade among other things, including blood infections. It's a powerful drug, but the idea is that the risk of some of those potentially dangerous side effects is outweighed by the damage that active Crohn's could do in the long run.
I totally understand not being comfortable with the idea of staying on ANY powerful drug long term, let alone for the rest of my life - especially in my 30s. It's a dilemma. I guess the hope is that safer drugs will be developed - or even a cure - before then...
And I was encouraged reading about your safe and smooth pregnancy - and healthy baby - while on Remicade...it's peace of mind for a lot of women, I think.
I did have warnings, but I ignored them. I was getting more and more symptoms but was too busy to make my GI do something more about it. We kept pushing the infusions closer together but I still never felt right again. Until I was so ill my PCP wouldn't let me leave his office but instead booked me a room at the hospital for a week.
I did not take Imuran which is often used to help prevent those antibodies from being formed. That might have attributed to things.
Also - all my GIs have said Remicade and pregnancy are things they are comfortable with. There have been many women stay on it and do fine. Now, I'm on Humira and next to nothing is known about that...