Auto-immune Hepatitis

Hi.. I'd like to communicate with others who have been diagnosed with Auto-Immune Hepatitis.  I'd never heard of the disease until I was told I had it.  I get plenty of info in general but have never spoken to another person with it and have so many questions I'd like to ask regarding long term treatment side effectsd, reducing meds, etc.
Thanks.....  Elizabeth

[Kalio1]

Sorry to hear of your diagnosis. There are a few people who post here who have this, I hope they answer your query. Most of us have or have had Hep C so you might have better luck with your questions on a board that focuses on autoimmune hep.
I have heard people say that this site

http://www.autoimmunehepatitis.co.uk/

is a good one and it is geared to those with this disease.
Not to chase you away or anything but they might have more info.

[Maari]

Hi Elizabeth
I have AIH, was dx in June 04. I am now on Imuran only and doing well.  If I can answer any question please ask.  The UK site is one I visit often.  It is good to know the You are not alone.
Kalio is right there are only a few of us on this site. Welcome and hope to talk to you later
Maari

[ElizabethMac]

Thanks so much for answering me.  I have been to the co.uk site and couldn't seem to get in but will try again now.  Maari, I was diagnosed in November 2004 so am hopeful to be like you someday and off the Prednisone altogether.  
I would like to ask you about hair loss on the Imuran and the other effects of long term immune suppresives.  I've been told it's unlikely that I'll ever be off Imuran ( am on 100mg per day ) so I think they are issues I really need to address.  There's a chance I could get off the Prednisone but the last time I went below 7.5mg I blew out on the liver function tests and it took me months to get stable again.  Also how often have you had to have a liver biopsy.  I had the first one in November 2004 and the doc seems to think I should have another one in November this year...although I'm certainly not keen !
Thanks again to both of you for taking the time to reply.
Elizabeth

[Maari]

You commented about the UK site, and I also have not been able to post. I think they are having a glitch, normally the site is very stable.  I noticed some of the regulars are saying they are having problems too,  Some one was trying to contact Matt, he runs the site.  So keep trying, I'm sure it will be fixed soon.

About hair loss. I noticed handfulls of hair after showering, combing etc. That happened about 1 1/2 months after stopping the prednisone. The hair loss stopped after about 30 days.  I did not go bald, but I was worried for awhile. I no longer have to shave under arms (no hair) and leg hair have very little. While on preds I had brain fog, so some facts are fuzzy.  I think that predn has a side effect of hair growth, so I feel some of the hair loss was extra hair from predn and some from Imuran. The texture of my hair has changed, it is dry and some what more fine than before.  I have to use conditioner or I have trouble combing my hair, it gets tangled and knotted. The other side effects I was told about with Imuran was it can affect red blood cells, so I have blood work every 6 months now.  I have charted my labs, (always get a copy) and note any test that is out of the normal range. If I don't know what the test is for I look it up on labstestsonline.org  a very helpful site. Some folks on other sites have mentioned cancer in connection with Imuran.  But there is only 1 person who said she got cancer, so I do not know if that is an issue.  There are quite a few people who have been on Imuran for a long time with no problems.

I am taking 100 mg Imuran, just a note.  The Liver specialist said I needed to be on both, but I talked my gastor into going off predn. I said "how will I ever know if Imuran will work if I can't try it" and I promised that if Imuran alone did not work, I would go back on predn. I am SO GLAD, I did not have to go back on predn.  I did get lots of joint pain, went to a RA and was dx with arthritis. Since being put on PrevacidNapraxPac, I fell good.  The Ra said some of my pain was arthritis and some was from the AIH.   Biopsy, I have had only one, I wanted another, but my gastro said no.  My labs are good and it is dangerous. I said I feel good now and have no pain in the liver area, but no. It seems that there is no set schedule or number of biopsy..  It varies with the Doctors.

I also have osteopenia and am on Fosamax, think predn might have caused that. My bone scan shows improvement.

Did that help? Ask any thing. I have meet only 1 person in person with AIH.  She lives about 80 miles from me, so we meet half way and have lunch once a month.  This disease give us an instant bond. Take care

[ElizabethMac]

Hi Maari !  It was so good to hear from you and you've been so helpful !  I hope I'm posting this answer back to you.  I've always been quite ok with the internet but these forums seem to stump me somehow. Will get used to them eventually I guess.

You're very fortunate to have someone to meet and swap stories with.  Not that I would wish this on anyone, but I'd like to know someone else with AIH.

My hair is exactly the same.....drier and thinner.  Not shiny or as soft as it used to be.  I also don't grow hair at all under my arms anymore and like you the leg hair is sparse.  It's the ONLY thing I can say is a plus about this whole thing.  I try to relax and not panic about the hair loss from my head but it's so scary to think of ending up bald, although my Professor says it will stop eventually....easy for HIM to say.....lol.  

I always have so many questions and right now can't think of any !  I'll be back though, and once again thanks for replying.  Elizabeth

[Maari]

Hi Elizabeth
I know I felt so much better when I found some of these forums.  I did not feel so alone, and someone else knows what it is like.  Someone else has had the same experiences and can help calm fears.  Knowlege is power.

As I said, ask any question.  Take care and it is nice to get to know you.

M

[NClady43]

I am new to the site. I too was diagnosed with having AIH in May 07.  I have so many unanswered questions. I would love to talk more with you and others with AIH.  My gastro Dr put me on Pred. I went to the Mayo Clinic in MN, the hematologist there gradually took me off the pred. He said that my tests and biopsy showed more fatty liver than AIH. My symtoms (symptoms) are worst, lots off right abdominal pain and lower right back pain. Also a high amonia (ammonia) scent in my urine. I get tingling in my right shoulder down to my fingers with right shoulder pain. Blurry vision, headaches, tired and insomnia.  I need help!!!

NClady

[minnesotaboi]

hi nclady I'm from minnesota I have hep c and I get alot of numbness in my legs, blurred vision, dizzy, pain in my side. I want to go to the mayo clinic do you think it's worth it?