Newly Diagnosed With AIH

Hi everbody :) Norwegian woman with AIH just arrived :) I have just learned that there is nine known cases in Norway, so there's not many to ask... I was diagnosted with this disease in may 2011. The doctor prescribes Prednisol and Imurel. Before the medication; I had serious pain in various joints, but the blood-samples indicated no arthrithis. Anyway; I stongly feel that the pain isn't in the join, more likely in the ligament, tendon or the muscle attachment. At 40 mg of Prednisolon the pain disappeared, but now, at 7,5 mg the pain has returned. My right leg is hurting so bad I can't sleep, this is an increasing problem. It's a burning or freezing pain, like the feeling when a muscle is infected, also mixed with the annoying feeling of restless legs. Sometimes the lower leg and the foot is also in pain. In my legs the pain is more or less permanent, but it may also appear in fingers, elbow or a different place. Since thy occure and disappear I'm starting to wonder if it is all a product of my mind... Now I wonder, as an introduction question if anybody of you goodfellows got the same problem ? And what to do about it ? My doctor wont give me any kind of pain-relief due to the risk of my damaged liver.I'm looking forward to get to know you and maybe finally get some answers :)

Post Edited By Moderator (hep93) : 1/23/2012 11:32:39 AM (GMT-7)

Hello Jill-Marilyn!

Welcome! As Connie said, I was diagnosed with AIH Jan 2007. For 3 years prior to diagnosis, I had joint pain in my hands. I had been seeing a rheumatologist annually to screen for connective tissue disorders. My ANA had been elevated since 2003. No other antibodies ever came up positive, except for after diagnosis. I was positive for ASMA. I am only on Imuran (azathioprine) now. I've been off pred since Dec 2008. Pred was great for alleviating all kinds of pains. Since I've ben off, I've had migraines, headaches and a lot of sinus trouble...of well! Im happy to be pred-free! You are not alone in having pain during pred wean. I know a lot of other AIH'ers who have had the same problem. How often do you have your bloods checked?

Do you find the on/off pain in your extremities worse in the cold?   Do you have blood flow issues in your toes and fingers? I also have Raynaud's phenomenon and that can cause pain.  For me it's only bad when it's cold and I lose sensation.  Maybe you have "restless leg"?  Have you spoken to your hepatologist about it?  They can also run antibodies for some other autoimmune issues like the connective tissue disorders.  You don't want to be paranoid but be aware that once you are diagnosed with one autoimmune disease, you can develop others.

Have you tried ice or heat to relieve some of the pain?  You should speak to your doctor again about a low dose of ibuprofen or acetaminophen...some docs say it's OK to take one or the other occasionallyand in small doses but you do need to talk to him/her...the pain may be harder on your body than taking an occasional pain reliever.

I had thought you'd written ALA and had posted on that. However, I see that it's ALAT. Here's what I found:
"Alanine transaminase, an enzyme." As to whether it's the same as ANA, I'll have to leave that to Dany.

Best of luck to you!

Hugs,
Connie

ANA = antinuclear antibody....the first screen for autoimmune disorders.  ALT and ALAT are the same as Connie mentioned...one of the common enzymes tested in the liver panel.

I'm happy you pressed the issue and didn't just accept the fibro diagnosis.