Hi All, How are you doing

[Jody515]

Hi, been awhile since anyone has visited out here & wondering how all are doing & if still in remission?  Jody

[MYS]

Is autoimmune hepatitis the same thing as 'primary biliary chirrosis' - (pardon me if I spelled any of those words wrong).
My liver biopsy, done in 2006, suggested that my liver had some of the characteristics of PBC.  I had a test for it, which came back negative, but that test was only 95% accurate.  
Since I already have 1 autoimmune disease - Hashimoto's - and there's still (2 years after Hep C treatment, 18 months after SVR) something about my G.I. tract that just ain't right, I'm concerned that I may be one of the 5% that has this, but doesn't test + for it.  
If anyone knows more about this, please send me a message.  I'm seeing my G.I. doctor - again - in April.  At the time of my biopsy, he told me that he couldn't believe that I'd be unlucky enough to have gotten Hep B  (which I never knew I had and got rid of without treatment), Hep C and PBC - the liver 'Trifecta' he called it, so I don't know whether I should find myself a new GI doctor who will do a little more testing.  Guess that would mean another liver biopsy....sigh...
Thanks,
MYS

[Jody515]

I am sorry but I really don't have any idea as to what primary biliary chirrosis is? I had two of the diseases myself & the aih was doing the most damage I was told so that had to be treated for 3 1/2 yrs prior to my treatment for the hcv.  I am close to 2 yrs svr myself.  All I do know is that last summer I started experiencing pain again in the upper part of my body, the shoulders to where it is hard for me to snap on my undergarment at the top & hard to ly on my side.  It concerened me greatly because this pain had been what had bought to my attention in the beginning of treatment which took about a yr to go away after the start of the treatment for the aih.  I saw my hepa dr in Nov, all came bk well from the blood work, but the pain has continued so I just don't know what to make of it.  I do know that last spring my prednisone was cut down to 2.5 daily so I don't know if that is it or what.  What is PBC exactly do you know? I think I will go google it in & find out.  If you have any training hospitals in your area that is where I would go find a hepa dr.  Let me know please if you find anything out & best of luck. Jody

[Jody515]

Wow, I just googled it in & it is a different autoimmune disease of the liver.  I had no idea there was another one other then aih.  Go google it in & get bk with me.  Do you have any of those characteristics like the itchyness, fluid retention, etc? Let me know

[MYS]

Regarding primary biliary chirrosis - you would think by now that I could spell chirrosis the right way!

I have some of the symptoms of the early stage of this - fatigue, itching - mostly in the winter when it's dry, and dry eyes and mouth.  When I was on Hep C treatment I had to use eye wetting drops each night.  For years, I've had to sleep with a glass of water by the bed, so I can drink some of it when I wake up several times in the middle of the night.  I also have 1 of the symptoms associated with the later stage - digestive issues, which I thought were related to the Hep C, even 2 years after finishing treatment.  

I guess I should ask my G.I. doctor to test me for auto-immune Hep, also, if there is a test.  And, find out more about it.

I can't believe there are 2 autoimmune liver diseases!  And it would just be my luck to have PBC and test negative for it!  

I guess the 20 year old bottle of wine that I opened Saturday that had a rotten cork and sediment on the bottom was sendng me a message - I should avoid alcohol!  

[MYS]

It's me again - just read what's on this site about autoimmune Hep.  I don't think I fit the profile, but I do think I'm more of a PBC kind of girl...
What does it matter?  One thing or another attacking your liver - it all ends the same way.  

[Jody515]

Hi, regarding aih it is like your body is rejecting it's own liver, it has the same effect as lupus does regarding the heart & kidneys.  As far as symptoms I am also dry mouthed all the time & take a lrg glass of water to bed with me.  Any disease of the liver brings on fatigue but I don't have any itchiness but we each are different. The only way you are going to be able to tell if you have any type of autoimmune issues with the liver I believe is with another biopsy.  That is how I found out about both diseases.  I had no idea there was another autoimmune disease of the liver.
Go over to the Liver Disorders Forum to see if anyone there has any idea.  Stay in touch & best wishes go with you.
Jody

[Jody515]

Oh I forgot, for now, please leave the wine alone until you know what is going on. And do you know what stage your liver is in? Mine is stage 3, don't  know what grade level & don't  even know if I want to know that. I just do everything I can to try to keep my disease under control.  More & more women who have the hcv thing also are having autoimmune issues so please ck it out.

[MYS]

I was Stage 1, Grade 2 when I had my biopsy almost 3 years ago.  I finished HCV treatment 2 years ago, haven't drank much since then and REALLY don't want to have another biopsy!  (Massive vomitting occurred afterwards - I'm really sensitive to the type of anasthesia/sedation that's used on me.)
This is not something I'm going to suggest to my GI doctor when I see him in a few weeks.  I had a rough enough time getting my son to be my driver when I had a colonoscopy a few weeks ago and don't have anyone else to rely on.