My liver specialist wants to take me off my azathioprine/immun supressant for 6 weeks. My fecal test came back abnormal for lactoferrin. Dr google said that is ulcerative colitis My GI does not believe that I have that. My liver specialist doesn’t believe that azathioprine is causing my bowel issue because I have been taking the suppressant for so long. I tested positive for lactoferrin in my fecal test. I’m taking very strong antibiotics because mild colitis showed up in my small intestine. The hospital diagnosed me with infectious colitis. I’m concerned that comiing off the azathioprine for 6 weeks will cause an autoimmune hepatitis flare. I stopped taking azathioprine for 15 days last year with no problems. I did this to have my breast implants removed. I felt that it was best to remove them. But my liver Dr said that I may flare and that he would have to raise my prednisone if this happens. I really need advice. I don’t want to risk a flare, I have read that many of us with aih/pbc don’t fully recover from flares.
Not sure what to do: My liver specialist... - PBC Foundation
Not sure what to do
I'm very sorry that you so distressed with this situation. I don't know about your case but I have been in a blind-panic before when a few issues seemed so tangled the more I worrried about it the worse and more confused it all seemed. I felt as though it was all a big mess and I wasn't being treated as a whole body, just a bunch of separate parts being pulled this way and that. I phoned PBC Foundation. When Collette phoned me back she managed to sort me out, calm me down and set me off to my specialist appointment with a clear head. It really helped. I hope that it could work for you. I believe it would. Best wishes
Thank you for responding. It’s so frustrating. It sure does make it a lot easier to talk blindly in forum. After feeling better in the hospital I did not want to talk about my bathroom issues anymore. On March 4th I have an apt with my GI. I don’t want to talk about my digestion and bathroom issues face to face with him.
It sounds like 'bathroom issues' is exactly what you need to talk about to your specialist? It can take a bit of planning and practice. We've been programmed from childhood NOT to talk about pooh! Could you think about the various processes in detail that you experience like how bms stop you doing ordinary activities of daily life? And write them down as you think of them. That'll be half way to talking about it. Remember, if our bowels are no prob, we don't need to talk about them. If they are a problem, cause pain, steal all our time and energy, embarrass us, make us lonely, depressed we HAVE TO talk about it to the doctor. Not just for relief of symptoms but cos equally, those feelings will make us more ill. They even can be the only cause of the problem. Please tell dr, in very clear detail. And tell her about your fears of one remedy being in conflict with another. You'll feel much better. You really will. Very best wishes. I hope it goes well for you at drs. Let us know.
Hi Jenny.....if I had the chance to stop my mercaptopurin for 6 weeks, I would. I can't take azathioprin....you said that you heard that its difficult to recover fully from a flare....I feel its different for each of us. With me I had a flare in November and this time I can't quite pull myself round. I suppose theres a lot to be said about age when it comes to recovery. I am now almost 55, when diagnosed in 2011, I was actually super fit, which is probably why I recovered so well, this time, I am not super fit because the illnesses gave me restrictions, even more so now. You may be absolutely fine, I wouldn't worry untill needed. X
When to take urso?
Specialist referral
Wrong result 
Confusion , is it PBC or not?
