Newly diagnosed with AIH

[Newbiesilver]

Hi All,

Newly diagnosed with AIH, as in today!. So now starting to learn. More tests to come to see what stage. Would welcome others experiences and tips on how i can help manage this.

Thanks

[Hidden]

Welcome!

We hope our well known supportive members will jump on to share their stories soon. Here is our publication on AIH for starters...…

britishlivertrust.org.uk/in...

[AyrshireK]

If you do Facebook at all you will find a super support group on there with over 3000 members all of whom are either fellow AIH patients or carers of loved ones with the condition such as myself. Group is private so no one else on your feed sees what's posted, admin are all AIH patients themselves and group is supported by many of the top doctors in the UK working in AIH treatment and research. (Pre-covid) they held regular face to face, conference type gatherings and have a wealth of 'files' covering all aspects of the condition which have come from these gatherings and supportive experts.

Find us at:- facebook.com/groups/AIHorgUK

Katie

[bleeny]

Hi. I don't have any tips but would also recommend the facebook group. I was diagnosed with AIH in December - on Budesonide for a few months, Azathioprine gradually brought in and all blood tests are now good. I have no side effects from the meds and feel well. I'm now down to 3 monthly visits to the liver clinic and 3 monthly blood tests. I hope everything goes as smoothly as it has done for me, so far!

[Jay_89]

Hi,

I was diagnosed in February. I really haven't had to make many life style changes, since starting on immunosupressants/steroids. Just no alcohol intake and resting when my body tells me too

Depending on what stage your at, hopefully you'll manage just fine.

[Anothermember11]

Hi, Hopefully now you know what your dealing with you can get as much information and support as you can. I was just wondering what lead to diagnosis in terms of any symptoms you had? I’ve spent 5/6 years back and forth to rheumy with joint/muscle pain, hair loss and bald patches, a rare lesion rash on my face and extreme fatigue. Bloods always came back ana negative. It took my new gp recently to send more specialised bloods which have come back LUpus anticoagulant positive and smooth muscle positive. Awaiting second blood test, on 19th July to confirm if still there x

[Oldbits]

HelloMy husband has AIH and is a long way along the journey with it, off for a transplant assessment at Kings College soon. My advice to you is eat healthy, exercise regularly and drink coffee and reduce alcohol. If you need mental health support ask for it. He's had it, we think, for about 5 years or longer, but we didn't know. You can turn things around if you look after yourself now. Remember you're not on your own.

Good luck

[Malty3870]

Hi I was diagnosed in Setember, no symptons and AIH just hit me, with in a week I had liver failure and was very close to a transplant, my condition was life threatening, mine was a severe case my Drs carnt believe I survived without having a transplant r dying, my billarubin levels were nearly 400. I'm still not right and have a few other problems because of my liver failure but glad to be here to tell the tale. Some people live there whole Ives without not knowing they have it. Fingers crossed yours ain't to bad and good luck 🙂