Newly diagnosed: Hi. My name is Louise... - British Liver Trust

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Newly diagnosed

LouiseDalling
LouiseDalling

Hi. My name is Louise and I am 39 yrs old and was told after a liver biopsy that I either have PBC or autoimmune hepatitis. I should find out in the next week which one. It has come as a huge shock to me as I've never really had any symptoms apart from discomfort in the right side of abdomen. I have been having tests since 2015 when my let's were higher than they should be. I have been put on ursodeoxycholic acid and seem to be tolerating them ok. At the moment I am waiting to have a fibroscan. Any advice etc would be appreciated.

5 Replies
oldestnewest

Hope your well Louise. I had autoimmune PBC/NASH. Diagnosed 14 yes ago quite by chance on routine blood tests at GP. I became. Try unwell over the past 3 years and was successfully transplanted in May this year.

Thank you for replying. Good to hear you've had a successful transplant. At the moment I feel ok apart from being tired and an ache on the right side of abdomen. I think what frightens me is not knowing how long It will be before I don't feel well. I have 2 boys who are 9 and 5 yrs old.

Hidden
Hidden
in reply to LouiseDalling

Auto-immune hep and PBC are both long term health issues that can be managed with medication. There are people who have been diagnosed with it for over 20, 30 years and are still working. Of those who have auto-immune hep (AIH) only a very small % (roughly 5%) will need a transplant. Once the inital diagnosis is confirmed the usual protocol is to start you on steroids and an immune suppressing drug. The steroids will control the inflammation and as the inflammation dies down, then you will be weaned off the steroids and the immune suppressing drug will be increased.

They are both managed conditions and when I was diagnosed with AIH 10 years ago, I was told there was no reason to expect a shorter life expectancy. Once the condition is controlled it is possible to lead a normal life, but fatigue is usually an issue, so it is possible you may not be able to do as much as before. It is possible even when the meds have been working for a while, for you to have flares, but these are usually controlled with steroids being increased.

AIH is a very individual disease and so not everyone has the same experience, so there may be a few blips along the road, or there may not. Try not to panic. The drugs do work and you might feel lousy for a while, but a positive attitude and plenty of questions to the consultant (if you want to know more) will really help you to deal with this massive shock.

There is a Facebook group that you can join and the biggest bonuses for me from this group are the notes from meetings that explain the whole thing and the meetings themselves that are held twice a year.

autoimmunehepatitis.org.uk/

I wish you all the very best with you future health and please ask if you need to know more :)

LouiseDalling
LouiseDalling
in reply to Hidden

Thank you for your very informative and reassuring reply. When you Google these things they are very doom and gloom about everything. You have made me a lot more positive 😁.

Hidden
Hidden
in reply to LouiseDalling

I'm afraid we're all prone to Googling and getting scared out of our wits. However, having had the condition for so long, I do know that some of the information out there is incorrect, which is why I wanted to let you know how it is. As I said the Facebook files page will give you an accurate picture and I'm pretty sure you can find a leaflet somewhere on this site relating to AIH/ PBC. Incidentally, the Facebook group caters for both conditions as there are some people who have both conditions.

I'm glad I could reassure you, as initially it can be worrying, especially since your GP is unlikely to know too much about it. Even when you are in hopsital, you will likely be asked by doctors from other areas "How did you catch it?" They just hear hepatitis and assume. I'm sure you already know you can't catch it and it isn't contagious!

Good luck and stay positive:)

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