Autoimmune Hepatitis

Jesse, we have several current posters with AIH. I hope they post in. Welcome back, hugs. MAMALAMA

Hi Dany,
I was diagnosed in 2010 with autoimmune hepatitis, blood work, and biopsy confirmed. I started taking pred 2011d then tapered down and now at 5mg pred a day. My then and now hepatologist-also, gastroentrologist is not in a hurry to put me on imuran (azaphrine, don't know spelling) but my blood work seems to be somewhat ok with my immuglobins 1760, my pnt just off the mark barely, but my platelets still 75 (low). I saw a liver specialist UNC chapel hill and he was suggesting imuran generic also. my next doc appt is in august along with my bi annual ultra sound. He may suggest the imuran now but still my bp last couple of checks was 153/93 but lower once I leave the doctors office. I want to wait to see If Im put on the imuran if my bp goes down before I start taking bp meds. My meld score was 9.4 so I feel good about that but if I could do away with a lot of these side effects now and potentially in the future with imuran Im willing to maybe try it. I spend alot of time researching Autoimmune hepatitis from London J. to Mt S in NY. My key to dealing with a lot of the side effects is knowledge I feel. Of course I eat what I think is a healthy somewhat of a diet which has changed dramatically compared to what and how I used to eat. Vegetables-spices-baked-no fast food-low sodium-look on the ingredients label on everything I pick up in the grocery store kind of person now. hope wasnt too long!

The whole immunosuppressant thing is to get you off the steroids. Long term, the steroids are worse for you than the risks that come with the immunosuppressants. It is quite possible that the Imuran (azathioprine) helps lower the BP. Be forewarned, it isn't an overnight dealio. It takes about 2 months for the aza to kick in. Then you can start the wean off the pred. Also, be sure your 5mg to zero wean is ridiculously slow. You have to make sure your adrenal glands have time to start working on their own again since they've had a few years off.
My 5mg to zero wean took 2 months. Dropped 1 mg every 2 weeks with a blood test prior to each drop. They'd likely have you stay on the aza for a few months anyway then possibly increase that dose prior to the wean. I had been on the aza (at 50mg) the whole time along with pred for 20 months before my wean. Then we bumped aza to 100mg and after about a month, started the pred wean. The key to the slow wean, aside from getting body ready to make its own endogenous steroids, is supposedly to help with avoiding joint pain. Many AIH patients who wean off pred too quickly have a lot of joint pain :-(

Thanks everyone!

jesse