In remission...still need remicade???

My GI's have told me that I would need to stay on it to maintain remission as well. I guess until something better comes along.

Instead, I only lasted 2.5 years before building antibodies to it and going into a huge flare. I was completely symptom free before that so I guess the Remicade really was keeping me from a flare. I found myself admitted to the hospital unexpectedly. I'm now on Humira.

Same thing with Humira. GI says I just stay on it if it's working and keeps me symptom free. After going through what I did when teh Remicade stopped, I'm okay with staying on Humira indefinitely.

It's depressing but a lot of people take maintenance medication their whole lives. I do for allergies and asthma so it's nothing new for me. Just add it to the list!

I went almost 3 years on Remicade before having difficulties. GI determined I had developed antibodies also. My warning signs were an increase in previous symptoms, and more importantly, becoming very ill AFTER my infusions when I had not had that problem in the almost 3 years prior.

When I started Remicade, my GI explained that if Remicade reduced or eliminated my symptoms and improved my quality of life, then I would stay on it until either of those two factors changed.

Hopefully Remicade continues to work for you fo a very long time and that a cure is discovered allowing us all to lead normal lives.

Hi Apples, I have been on Remicade for over 2 yrs. and I will be on Remicade for the of my life.

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!)

I am not a Remicade patient, but I do know that in the 25 years since I was diagnosed with Crohn's, there have been at least a half-dozen new therapies to go through successful clinical trials and reach the market -- including Remicade and Humira. I would expect that 15 years from now, GIs will laugh about how they once treated severe intractable Crohn's with Remicade as they give us whatever new silver bullet has been developed in the meantime. I bet it's unlikely that any Crohn's patient in her 30s will still be using Remicade at 40. More likely something we have not yeta heard of.

apples said...
When the remicade stopped working for you after 2.5 years, did you have any warning?  that worries me because i am hitting the 4 year remicade mark and never heard about this antibody thing....

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...