Newly diagnosed

[Juliebo123]

Newly diagnosed with autoamuine hepititas been put on steroids 5mg now on 4 a day there reducing them weekly .I go back hospital end Dec .I'm devastated and scared is this a death sentence

[AyrshireK]

Sorry Julie, what it is you have been diagnosed with? It has come up as ISH. If you confirm your diagnosis perhaps others with the same can come on board and reassure you and share their experiences.

Katie

[Juliebo123]

Sorry I'm diagnosed with autoamine hepatitis

[AyrshireK in reply to Juliebo123]

The good thing with Auto-Immune Hepatitis is that it can be brought under control in the vast number of cases - yes you will need to take a load of steroids to start and this will hopefully bring down your level of inflammation. Steroids in some cases do lead to all sorts of additional symptoms however without them your liver will continue being inflamed and over time damaged. Once doctors have the inflammation controlled they will then introduce an immune suppressant therapy of which there are several types but over time these will have the effect of damping down your immune system to prevent it attacking your own liver. Many people go into a medical remission with the various therapies and live long and fairly normal lives. AIH is NOT a death sentence.

If you do Facebook at all there is an amazing AIH support group on there which has over 1400 members many of whom are living with the condition and some who have had it for many, many years. I am on there too as I support my hubbie who has cirrhosis due to AIH - his AIH never gave any symptoms at all meaning it went totally unseen and undiagnosed and untreated until he presented with late stage cirrhosis symptoms. He was diagnosed in April 2012 with cirrhosis after nearly dying from a massive upper GI bleed but over the years his liver has stabilised and although he spent 10 months on the liver transplant list his condition (in medical eyes) stabilised enough for him to be delisted and we are now back at the monitoring stage.

The AIH support group I mentioned are supported by many of the top doctors in the UK who are working on AIH treatment and research, around the country there are member groups who get together socially for mutual support plus every year they have a couple of big get together/conference type meetings where the top docs in the field come along and give talks. They have numerous files of information drawn from these meetings which they share with members.

Page is at:- facebook.com/groups/AIHorgU...

I believe that members also contributed during the re-writing of the British Liver Trust page and leaflets on AIH so well worth having a read at those. britishlivertrust.org.uk/li...

It isn't a death sentence, yes its a long term chronic health condition but it is manageable.

All the best, Katie

[Juliebo123]

Thankyou so much I will join on Facebook I am learning how to deal with this day by day .I've never had health problems I'm very active .only drink socially very rare and the steroids have helped no pain in my wrist now and jaundice has gone.tho I feel bloated .I'm trying to keep to healthy diet .it is life changing but it was the unknowing I was scared of .once again thank you

[clover90]

I have had AIH for 6 years. I was only on steroids for 6 months . I still continue to take Aza which will be reviewed in year 10. I see my consultant every 6 months.

Ask your consultant lots of questions and I agree the Facebook group is a good form of information