PBC - Auto Immune Hep Overlap? Anyone else?

[TheresaPeters]

Does anyone else have these two auto immune liver diseases? I'm having trouble finding information about the two together.

[Auds5]

Hi TheresaPeters

I was diagnosed in 2015 with PBC and then AIH in February 2017.

Im unaware of a forum here on HealthUnlocked for both so I follow the PBC Foundation and the British Liver Trust.

The British Liver Trust have leaflets on both diseases which I found very helpful when I was diagnosed.

I know there is a group on Facebook called Autoimmune hepatitis/PBC support group.

Hope this is of help.

Auds5

[TheresaPeters in reply to Auds5]

Thank you! I've joined the fb group.

[gwillistexas in reply to Auds5]

I joined Liver Foundation fb.

[Hidden]

I was dx with PBC in 1991 and AIH in 2011. Following liver biopsy, I was prescribed massive dosages Prednisone and Azathioprene and gradually weaned off both. When I got down to 25 mg. AZA, I had an AIH flare and my LFTs went right back up. I was immediately put back on the maintenance dosage of 50 mg. AZA. Although the AIH is in remission, I will have to take the daily 50 mg. AZA for the rest of my life. I call it my little poison pill because it suppresses the immune system and makes you liable to catching viruses or anything going around. However, I've been very fortunate in that respect. So far as I know I'm doing fine and my LFTs couldn't be better. I joined an AIH support group, but haven't been back on there lately.

[LucyH16]

I was diagnosed with PBC in August this year and AIH overlap in October, getting used to living on tablets and no alcohol and altered diet. Not much out there but did read something last night in the PBC foundation site.

It’s a rough road at times, but with support from each other it makes the journey ok!!!

Lucy

[TheresaPeters in reply to LucyH16]

How is your diet altered? My hep specialist said to eat whatever I wanted - which seemed strange to me!

[LucyH16 in reply to TheresaPeters]

My first consultant said low fat, low salt and low sugar. Which I tried to stick to, however in her letter to me she said to keep my healthy BMI. Once I did the diet I noticed improvement in things like my dry eyes, but that was about all. She also said I had to be tee total. My liver consultant says I can have the occasional drink and butter!! It’s all just so confusing, I have stayed low fat, but not as strict as I was. Asked to see a dietitian and have an appointment for February.

[gwillistexas in reply to LucyH16]

I’m not as strict with my diet as I know I should be. I have cut back on sugar & salt to some degree. I’m too small to go low fat. I drink lots of water with fresh lemon. It’s tough.

[exy21]

There's a Facebook page. I have pbc/aih I was diagnosed aih then a few weeks later after a biopsy with pbc.