What would you do?

What would you do?

I’ve been in symptomatic remission for a year now and my gastroenterologist is suggesting I eliminate 6mp and rely just on Remicade. A little backstory: I had added 6mp prior to the Remicade during a nasty flare, and 6mp couldn't pull me out itself. He wants me to drop 6mp for several reasons:

First, I have been slightly neutropenic (meaning low white blood cell count). The likely cause is the 6mp. Normal is 3.8 or greater, my WBC values in various tests since June are: 3.3, 3.5, 3.2, 3.6 and 3.5 (last two jumped after dropping from 75mgs to 50mgs daily of 6mp in August). Given, I am just barely out of range, not in the scary territory of really worrying about sepsis or other dangerous infections occurring (which is values in the 1, 2-ish kinda range) with my current WBC results.

Second, I have been on 6mp for over 2 years, the time in which he wishes to get his patients off of immunosuppressants due to concern about melanoma (skin cancer) over long term use. Basically, if their use is no longer necessary then get patients off of it to eliminate the chance of additional side effects occurring. And as a plus, it would mean no more trimonthly blood tests (if off 6mp).

Certainly, I don’t want to be on more medications than is necessary and reducing long-term risk seems like a good idea.

The question of antibodies to Remicade without the 6mp comes up in my mind. It worries me a little bit. As now, I’ve got no fade in response at all, between Remicade infusions. Generally, starting Remicade and 6mp concurrently produces the smallest odds of developing antibodies. Whether it’s essential to continue the 6mp to prevent antibodies indefinitely, I haven’t seen stated/studied. Certainly, the initial entry of a foreign material into the blood stream is when it is most likely to trigger an immune response and develop antibodies.

He wants to run a series of tests before proceeding and verifying it is safe: Prometheus Ansr IFX to check for Remicade concentrations before my next infusion and check for antibodies, and do a sigmoidoscopy and verify I am in endoscopic remission. If those tests come back fine, he’d feel safe in recommending I get off 6mp. If I go forward with the tests, then either I agree and want to proceed with dropping 6mp, or would at least glean some information from those tests (I haven't had a scope done in a couple years, never had antibody levels checked).

I'm pretty much wavering, back and forth between one choice and the other (stay the course, or eliminate 6mp). What'd you do?

I've never heard of people only staying on 6mp for 2 years. I don't know what I would do. I was on 25mg of 6mp for a while. If a very low dose like that helps get your WBC up a little and reduces are risks while still providing some benefit, it might be worth considering. I know the idea of eliminating a medication is always tempting, especially when you're not 100% sure it's doing anything, but what if it is?

Had some free time this afternoon and tried in vain to find what the heck I was talking about. During the process though I read several things where people got off 6mp while on Remicade and did fine and read several things where they got off and flared again. From your signature it appears that you are on the lowest dose possible already. Can you take 25mgs? Have you been on higher doses and if so, why did you switch to 50mgs? Since you are on quite a low dose I would think that puts another notch on the side of maybe being able to discontinue it easier.

I have been on remicade without an immunomodulator since 2009. When I changed to an academic/research GI doc last fall and asked him about it, he said it was unnecessary. I've since had the antibody test because of a flare and my serum level was appropriate and I had no antibodies.

I was too hesitant as a 20 something male to take 6mp with Remicade so I lobbied my doc to use methotrexate as prophylaxis for anti-remicade antibodies. I have had the titer at promethius and was undetectable. I am now on humira because remicade did nothing for my joint pain and still use MTX as anti seroconversion prophylaxis. Its a crap shoot with the TNF alpha inhibitors. I have seen people do fine without co immunosuppression and I have seen people have severe serum sickness on cotherapy. I personally like the added insurance of MTX as I tolerate it well and its a small dose and there is less incidence of documented lymphoma. I am in bowel remission since going on anti tnf drugs.