Posted 8/6/2018 1:57 PM (GMT 0)
If you are in a sustained remission then there's a chance you can get by with less medication then you needed to achieve said remission. Many gasteroentererolgisits are trying to keep their UC patients on 6mp/azathioprine/imuran no more than 2 years, due to the small but cumulative lifetime risks of lymphoma. So, it is standard clinical practice to quit immunomodulators once remission has been confirmed and sustained.
I was one of the ones, that my doctor said go off of 6mp after a number of months within a endoscopically confirmed remission. I did ultimately flare, my GI frustrated said I was one of only two under his care that flared after discontinuation of immunomodulators in a remission. He said the majority of his UC patients are able to quit immunomodulators without issue. (Our maintenance plan was for me to be only on Remicade but it turns out my UC severity ultimately necessitated a lot more to sustain a remission, try and see, live and learn).
There's risk in everything, best you can do is take you best educated guess and hope for the best. In my case, I did fine for 6-months without 6MP, and then flared mildly. If you were to flare then it would be a number of months post-ceasing it. A flare would not happen within days, weeks, or even a month after quitting 6MP. I'd expect the 4-8 month range, with 6-months being average would be when it would result in a flare if is going to. You're talking 2-months or more until your body produces WBC (et al) at normal levels and maybe longer. Then, and only then would inflammation start building up due to under treatment of UC (WBCs causing inflammation). Likely take a series months of that simmering inflammation to manifest itself as a flare (depending on severity and extent of untreated inflammation building up), if it was going to.
So, the smart plan is to quit the 6MP for now. You could get some CRP blood or FCP stool testing after 3-4 months and see where you stand. You could do a colonoscopy/flex-sig if you wanted more accuracy, but likely overkill. Try and stay optimistic, but get some non-invasive data to see where you stand over the next 1/2 year or so.
And you can see from my signature, that I am still taking 6MP today, and now at the 75mgs dose that caused the neutropenia (low neutrophils) a number of years back. It's funny in that regard. I increased the drug from 50mgs back up to 75mgs after about a year after the initial incident. My blood numbers have been fine since. So, you aren't sworn off that medication for life, by any means. It can always be reintroduced further down the line once your blood results are normal. (Likely reintroduced at a lower dosage and monitored closely for a while as a precaution).