Auto immune hepatitis

[clarky123456]

Hi, I have only been diagnosed with this condition and came upon this site.

Anybody else out there with it?

I understand it is fairly rare.

[kurtymac]

What test showed the positive AIH result? It's rare, but a lot more common than you think. Many things can set off AIH like alcohol or even Tylenol.

[clarky123456 in reply to kurtymac]

I had an abdominal scan during treatment for Chronic myloid leukaemia which led to a liver biopsy.

[AyrshireK]

Yes it's rare but there are actually alot of folks out here with it. My hubby has a diagnosis of cirrhosis due to AIH. If you do Facebook at all there is a fantastic AIH support group page on there with over 1400 members. They have now been established as a charity and all members & admin are either patients with AIH themselves or like me loved ones of patients with the condition. They are supported by some of the top boffins in the medical field who are working on Auto Immune Hepatitis and they have regular get togethers (smaller local social events and annual/bi-annual conference type gatherings - of which there is one coming up at Queen Elizabeth Hospital Birmingham).

In case you are interested the Facebook page is at :- facebook.com/groups/AIHorgUK/

All the best,

Katie

[clarky123456 in reply to AyrshireK]

Thanks Katie

[Hidden]

It is clinically classed as a rare disease and ~10,000 (looking at the Facebook notes there are 12,800 people in the UK living with it) people in the UK have it, to put actual numbers on it. Even if you don't like Facebook, the group is worth joining for the talks that are arranged twice yearly: one in London and one in Birmingham. There is one coming up in 2 weeks time in Birmingham. Even if you don't want to talk to other people about it, the people who have the most experience in this field will present and explain a lot of what you want to know (and possibly some things you don't want to know!)

If you can't get to the meetings, then you can always access the notes that are on the Facebook page (once you have joined). These are from previous meetings and will give you the chance to read up on the condition and get the facts, rather than what people might know. As for what triggers AIH, the experts in the UK have been unable to state what sets it off specifically.

I wish you all the very best on your journey and hope it goes well for you. It is a managed illness, but not without some twists and turns as everyone is slightly different in their reaction to meds etc

[MisterX]

Quite rare, yes but then there are a lot of people about these days

Sorry about the diagnosis. On the plus side it is very manageable with immuno suppression - the really important thing at this stage is to establish the degree of scarring of the liver - if you don't have full cirrhosis (ie where the entire liver is scarred throughout) you can have some hope that a combination of immunosuppression and the liver's natural healing and regenerating capacity will reverse much of the scarring.

If you are diagnosed with full cirrhosis there can still be recovery in the initial stages. If the cirrhosis is established then the immunosuppression will hopefully keep further deterioration at bay and prevent decompensation - which is essentially when the liver can't carry out its usual functions properly.

So your consultants should be able to guide you further but you're not alone and it can be a very manageable condition.

Best wishes.

[Hidden in reply to MisterX]

Thank you for the info here on autoimmune hepatitis - Ive been tested for everything else and finally get my diagnosis in a few days time. Without wanting to make assumptions, Ive been finding out as much as I can about AIH to be reared as I can be for my appt. will check out the FB group- sounds helpful!

[kurtymac]

Immune system suppressors can be dangerous with CML. Your oncologist and hep need to be speaking very closely and on the same page, good continuity of care is very important here. If caught before getting to F3, lots can be done to prevent Cirrhosis. If cirrhosis, you can at least stay compensated with proper treatment. I wouldn't doubt if it was chemo, WBC cloning or bone marrow transplant that could have set off the AIH. Wishing you luck, hope the CML has been put into remission.

[DebbyJ1]

I have just been diagnosed July 2023 all very new to me any help or advice appreciated