Autoimmune Hepatitis and Epstein Barr

[kelmalec]

I was recently diagnosed with AIH at the Cleveland Clinic.  I am a 33 year old female with no other autoimmune problems (that I know of).  The AIH came to light after I was sick with infectious mono and got really sick (jaundice, low blood counts).  I was hospitalized, underwent bone marrow and liver biopsy, and countless blood tests (don't know my counts but the docs said I was in prehepatic failure).  What I want to know is if there is a correlation between the AIH and the Epstein Barr virus or was it the thing that just pushed the AIH over the edge?  I had some high liver enzmyme counts 10 years ago that my doctor at the time brushd off as "fatty liver."  Doctors mentioned that my AIH may have started way back then but just did not beceom severe until I contracted the mono recently.

Also wanted to know:  will life ever return to normal?  how long can I expect to be on high dose steroids (currently 60 mg prednisone)?  can I ever drink a 'real' margarita again?  what else can go wrong?  etc. etc.

[aaapattie]

I was diagnosed with Autoimmune Hepatitis (AIH) in Jan 2001.  I am 38 year old female.  I do have other AI diseases.  I had contagious mono when I was 8 years old.  Reflared 3 times between then and age 12.  But I had never connected the two diseases.  Possible I guess.  From my experience, I HAD to go to total bed rest to finally get over the Mono.  I've been fighting the AIH since February 2003 this round.  It also keeps reflaring.  I'm down to bed rest for that now.  The doctors have told me that once you get the AIH under control with Prednisone you can go down to only Purinethol or Cellcept to manage the disease long term.  If you want a good site to read up on this disease, check out:

http://janis7hepc.com/autoimmune_hepatitis.htm

I'm sure not any medically trained anything, but if you have any other questions I might possibly be able to help with, you are welcome to contact me direction via email at [e-mail].  Please put Autoimmune Hepatitis is the subject line if you don't care.  

God bless.  Pattie

[rascalgo]

Hi-searching and found this site.  I have spent overf 2years up & down with symptoms, and now I join you all with AIH.  The last year is the worst-hospital stay, biopsies, misdiagnosis, craziest test results, and so close to a transplant, with no clue or warning.  The drup therapy is the kicker isn't it? I just want to go to bed and acually sleep without spasms, cramps, and tingle feelings everywhere.  I have read alot of your comments, some sound very similiar and some I've never heard of.  I drive 2 hours from my home to get great care-Shands Medical Center in Gainesville, Fla.  They are so smart up there.
Best of luck to all of you, it's a tough road I am finding out.

[aaapattie]

So glad to 'meet' you two on here.  As you know, this site is mostly HCV guys and gals.  As much as I value all of their information, it's not exactly on point for us AIHers.  Very helpful, but not exact on everything.  So I'm glad to have a couple of others to turn to.  Of course no offense to the HCVers!  :-)  I'll run over and grab email and see if either of you have written.  God bless.  Pattie

[PDM]

Also searched and am new to the sight. I am a 31 year old male who after 2 months of being told I had mono this summer was finally diagnosed with AIH now 9 weeks ago.  Started out with 40 mgs of prednisone and am now down to 7.5 w/ 50 mgs of azathioprine.  
I am glad to hear others are suffering the same stupid muscle twinges I have over the last month.  When I started the drugs 9 weeks ago, I was thrilled because nothing really seemed to be happening.  But the last three weeks I have this constant feeling/discomfort in the muscles under my arms and in my chest/pecs.  I went in to my Dr. with concerns of something like Hodgkins, but there was nothing there for him to be concerned about and said this resembled some of the other muscles pains I had been having earlier in my abdomin (abdomen) and lower back/sides that have since gone away.  

Does this resemble anything some of you have experienced and will the muscle twinges eventually go away?  Is on again off again nausea still common after being on azathioprine for a month?  Thanks for all of your help.  I really hope you all can provide some feedback.

[rrock]

I am in a very similar boat and dreading reading these because my hope is that I DO NOT have AIH.  I have had high liver enzyme counts for just under 6 mos now, and have one more week to get to normal, or undergo the liver biopsy to find out what's wrong.  I'm eager to try to get pregnant and am scared to death that my future is over in that department.  Does anyone know anything about that?  I had mono in Nov/Dec and was jaundice and anemic, chest pains got me to the doc finally and now i have a rash all over my torso.  Fun stuff, can't say it's been the best year.