Haven't posted in awhile/discussion group/remi

Hey everyone.

I haven't posted in awhile and wanted to say hello.  I actually got to finally meet some people from healingwell at a Roundtable Discussion Group this weekend in Phiil.  ( I had wanted to visit Keith awhile ago, but he wouldn't let me:))  I am really happy that I went. I was a little hesitant at first but eveyone was really nice.  There wasn't any pressure from anyone and I left feeling like I had contributed some information that might help in the progression of treatment for this disease.  It was also nice to hear, in person, what other people feel is important and how this disease affects them.  Anyway, I really enjoyed myself.  It was nice to  meet all you guys who went and hopefully we can continue to keep in touch.

I am doing pretty well.  Still on Remicade but I get a colon. in Dec and my Dr might take me off Imuran.  Says the new info states the imuran doesn't help in preventing antibody production...anyone else get this from their doc???? 

Hi welcome back :) Yes, I would be interested in knowing what they had to say if you care to share? And it's awesome that you were able to meet up with a few from HW. That's great!

To answer your Remicade question: my doctor still observes the protocol of giving both Imuran/6mp and Remicade together, and he tells me most GIs in Canada are still of the view that there is enough proof to show that taking the immunosuppresant helps reduce your chance of developing anti-bodies.  However, he also told me that the GIs in Toronto have started to take the opposite view and are now giving Remicade alone.

Consequently, before going on Remicade, I did a bit of research and read the most recent study out that says that immunosuppressants only help a bit a first in reducing your chance of developing Remicade anti-bodies; the study goes on to say the risk of taking the two drugs together (cases of lymphoma only developed in patients taking both drugs) may not be worth the small benefit you may gain.  [I can try to find the study for you online if you like - I just googled 6mp and Remicade.  I believe it is a European study.]

I decided that for this reason, and for other reasons (namely how comfortable I feel taking these drugs should I want to become pregnant again), to go with taking Remicade alone.  My GI supported my decision.

I had my first infusion today.  Fingers crossed!

Candice and Michael - you guys are awesome! Ha Candice you couldn't hide your screen name for long. Now don't go making anyone mad again:) It's so great to feel like I really know some people on here now. And for everyone else, yes the discussion group was a wonderful experience. I'll post more details soon.

Hi Michael and Leslie (again) and hello Sherry.

Well, Leslie already got around to describing the meeting with Shire. It was all very impressive as she has said. I wanted to add that I was also impressed by how well all the people were actually actively LISTENING to what the attendants had to say. I think they were really trying to find out what UC patients need and want. It was apparant that these kind of meetings are very necessary because there is no way others are going to understand what we need unless they can really understand what we are going through. It is easy to read about it in a text book, but not so easy to see the emotional consequences and figure out the all-around nature of the disease...

Thank you for the info on the antibody-Remicade correlation "rhmama" Things can change so fast. When I first started getting treatments done, the research suggested staying on the imuran and now it doesn't....we'll see... Good luck with your treatments!!!!


sarah,
There is a chance the body can build up antibodies against Remicade. It's still a relatively new drug and they are trying to figure out the best way to try and prevent it. At first they thought that the imuran, 6mp etc would help prevent the excessive production of antibodies to Remicade, now I guess it is more suggesting that most people who have a problem with the antibodies building up do so bc they stop taking it for a long period of time. This is one of the reasons that you hear things like "once you are on it, you stay on it" -For fear of building up a resistance to it. I am sure if you do a search on this site you can find threads better explaining this in detail.

I'm pretty ignorant on most of this. My new doc (who is SO loved among his patients) has everyone stay on Imuran for 8-9 months when they start remi and then get off of it. He was pretty insistant for me to get on it for that period of time at least.