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JP51
New Member


Date Joined Jun 2010
Total Posts : 9
   Posted 6/21/2010 7:56 AM (GMT -7)   
Hi everyone. I am a new member.
 
I am from the UK so hope its ok to chat to you folks.
 
I was diagnosed with autoimmune hepatitis at christmas time last year at the age of 51 and have now been on prednisolone and azathioprine for 7 months. My bloods have been within the normal rane for about 4/5 months now and am on a reduction programme from the pred.
 
During my illness (before diagnosis) I was quite bad and had all the usual symptoms of fatigue, nausea, aches and pains, loss of appetite, jaundice and I lost a total of 56 pounds in weight.
 
I am now so much better although still suffer the side effects of the meds and withdrawal from the pred is not pleasant either. But it is so nice to feel fairly "normal" again.
 
Well thats my story in brief. If you should want to know any more about me please ask.
 
smilewinkgrin  

DGinSD
Forum Moderator


Date Joined Apr 2007
Total Posts : 839
   Posted 6/21/2010 9:07 AM (GMT -7)   

Welcome JP51!!

There are folks from around the world on here...Just people helping people so it doesn't matter where you're from!  I'm sure everyone would agree!

I was diagnosed with AIH in Jan 2007.  I am currently in remission and only on 100mg of Azathioprine and 250mg BID Urso.  I finished my pred wean in Dec 2008.  What are your current doses?  If you look back through the posts, I have posted my story before...not too eventful.  Had a severe onset but they diagnosed me 2 weeks after the jaundice set in.  I've been lucky that I have responded well to all my treatments.  I did have all the traditional pred side effects; insomnia, weight gain, irritability, moon face, facial hair (I'm female so that didn't make me any happier than my crazy mood swings), hump on my back, acne, water retention, etc...  All of it went away when I reached the 10mg dose (except the weight gain but at least I didn't gain more!).  I have also been lucky that my wean went well and my adrenals kicked in without a problem.  I have occasional joint pain but nothing I didn't have before AIH diagnosis.

I'm glad you're feeling well.  Sounds like you're responding quite well, too!


Dany
 
Diagnosed with AIH January 2007,
CMV (cytomegalovirus) June 2008
Raynaud's February 2010
meds: Azathioprine 100mg, Ursodiol 250mg BID
 
 


JP51
New Member


Date Joined Jun 2010
Total Posts : 9
   Posted 6/21/2010 9:48 AM (GMT -7)   
Hi Dany
Thanks for the welcome.
 
I am currently on 7mg of pred coming down from original dose of 60mg. Dropped fairly quickly to 20mg and now dropping by 1mg a month. I also take 50mg aza but may have to change as my liver doesn't like the higher dose of 100mg and my hep thinks that I would be better on a higher dose.
 
My story all kicked off in January of 2009 when I contracted hep A. I was pretty sick for a couple of months but recovered and went back to work in april. By July of 2009 I was feeling pretty poorly again and bloods showed that my LFTs were up again. Then followed months of monitoring and testing until finally I changed heps and he ordered a biopsy which confirmed AIH.
 
I guess I have been pretty lucky really. I have had some side effects from the meds but I am one of those very rare people who hasn't put on weight with the pred. I've had the mood swings and aggression, the insomnia, dry skin, moon face and facial hair (urgh nasty) and water retention.
 
I suppose I still have to get used to the illness as I find it hard sometimes to talk to people about it as they think that I might give them something. But generally I feel I'm doing ok.
 
 
Life is Beautiful


DGinSD
Forum Moderator


Date Joined Apr 2007
Total Posts : 839
   Posted 6/21/2010 10:15 AM (GMT -7)   

Hi again!

I think everyone with AIH has that feeling when they bring it up to others.  Everyone assumes that the word "hepatitis" means viral and contagious...when all it means is liver inflammation.  So I know some people on the AIH Yahoo group that simply say they have a rare liver disorder.  If you start with that, and if they ask more, you'll already be passed the more commonly talked about viral types.

Taking higher aza will help the rest of the pred wean.  Then once you're off the pred and stay stable, they could try decreasing the aza again.  Have you been on 75mg yet?  You don't have to jump to the 100mg dose...I did but I think they'll still finish the wean at 50 or 75mg.  Have you had the TPMT test for azathioprine tolerability?  I never had it done but don't get sick with it so it's all good. 

Gotta run and actually get work done!  Have a great day!


Dany
 
Diagnosed with AIH January 2007,
CMV (cytomegalovirus) June 2008
Raynaud's February 2010
meds: Azathioprine 100mg, Ursodiol 250mg BID
 
 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/21/2010 10:49 AM (GMT -7)   

JP51, welcome to the forum!  As Dany mentioned, we have people from all over here and all are welcome.  We also have quite a few with AIH.  I'm glad to hear that you have it under control at this point and are doing fairly well.  You will certainly get a lot of support here.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

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