Pbc & auto immune hepatitis

[Cazzie56]

Hi can anybody clarify have been diagnosed with pbc - stage 3 and auto immune hepatitis- still coming to terms with diagnosis - have been referred to work occupational health doctor who tells me that auto immune hepatitis is the same as pbc??? is she correct - also I am in uk but still under a gastroenterologist when I asked if I will now get to see a liver specialist I was told only when you need a transplant !!!!

[gwillistexas]

I thought PBC & AIH were different. I have PBC but not AIH.

[mjk98 in reply to gwillistexas]

It is different if you read my post I was just diagnosed today after my liver biopsy and autoimmune hepatitis with the right medication you can get rid of my doctor Isn't So convinced I have PBC he thinks it's autoimmune hepatitis with an overlap of PBC

[gwillistexas in reply to mjk98]

I just now read it

[Hidden]

Cazzie56: Don't let anyone ever tell you that PBC and AIH (Auto Immune Hepatitis) are the same. They are both Autoimmune Diseases that attack the liver, only the AIH is the more aggressive. PBC is a very slowly progressive disease and the URSO meds make it even slower.

My Liver Specialist was my Gastroenterologist, until he recently retired. He performed a liver biopsy and dx me with AIH in 2011. He literally saved my life. He immediately prescribed massive doses of Prednisone and Azathioprene with gradually lesser dosages until I was weaned off the Prednisone, but when it got down to AZA, I relapsed. Consequently, I will be taking the AZA for the rest of my life. That is no problem with me, as that is quite common and I am in remission and hope to stay there.

Not every specialist prescribes AZA, but may use another immunosuppressive drug. However, I believe you need medications immediately! You may never need a transplant with the right specialist and medications and sometimes the autoimmune attacks the new liver.

From what I have learned, not every doctor follows that protocol, but I believe that is the one recommended by Mayo Clinic. Since I have had PBC close to thirty years, and all my blood tests are so good, I really am very fortunate, in that I have never taken meds for pbc.

I understand that everyone who is diagnosed with AIH doesn't have AIH as severely as I did, so everyone doesn't receive the same treatments for it. I hope you have a good doctor who knows what he is doing and knows the difference in autoimmune diseases. I should know as I have several.

Wishing you the best.

[Cazzie56 in reply to Hidden]

Thank you for your reply - I knew she was incorrect she was only occupational health nurse but the report she sends to my employer is important.

Regards Carole

[exy21]

As above so wrong. I have both diagnosed after biopsy over 10yrs ago. Haven't been staged as my gastro says he doesn't believe in it. Bloods never great but better than when diagnosed. Only on azathioprine ( pred initially, high dose). Can't tolerate urso.

[JaneAnderson1966]

Hi, I am in the UK and was officially diagnosed as PBC/AIH overlap (20th Dec 2017) although I was expecting this diagnosis from the first time I saw my GI in July. Bloodwork and LFTs suggested this and liver biopsy confirmed. I have been told that my liver is inflamed but biopsy showed no signs of cirrhosis or fibrosis (is that the same thing??). Anyway am taking URSO and Pred at present and within 8 days bloods show ALP level has almost halved to 600. The itching has stopped!!!

I understand the two conditions are different - I think the PBC affects linings of small bile ducts whilst the AIH does the same to the linings of large bile ducts. I am feeling really well and managing to hold down my teaching job. Work seem supportive at present but things could change if I end up needing to take lots of time off.

I do intend asking if I need a referral to one of the specialist units as I read in the PBC foundation leaflet that overlap syndrome should be referred as a matter of course. I think I will ask my GP as I am worried about insulting my GI who I am actually very happy with.

I am slightly concerned that when they start me on the drug designed to dampen my autoimmune system (azia….something or other) I could pick up all sorts of nasty bugs but I will just have to wait and see.

I am trying to cope with the diagnosis by thinking that I with the right meds I could have a normal life expectancy. I don't want to spend my life worrying about something that may never happen. Also, as it can be a slow progressing disease, new meds may become available. I suspect there are worse conditions to have (cancer etc.). Whether or not I will feel the same way if my physical health gets worse is another matter.

Hope you manage to get your head round the diagnosis soon. Take care.

Kind regards

Jane

[Cazzie56 in reply to JaneAnderson1966]

Thanks for that have never really had the AIH explained to me - I do have cirrhosis and fibrosis - I am stage 3 finally diagnosed after biopsy - have had fibroscan too which just really confirmed diagnosis - bloods seem okay at this time my consultant not prescribed steroids as they coming down.

Regards Carole

[mjk98]

No it's not I was just diagnosed today my biopsy came back doctor says it's autoimmune hepatitis with overlap of PBC he it's not convinced is PBC because I have no signs of fibrosis at all most of it is an inflammation he's putting me on Prednisone which I'm not happy about and are so over the next two weeks and then I have to retake the blood test and we'll take it from there so the answer is no according to my doctor and I have a really really good doctor