Just diagnosed AIH

[Freyaviking]

Hi all, I've just been diagnosed with AIH and wanted to connect with other s who have it. I've just come out from hospital yesterday and I'm feeling positive but been put on steroids which are giving me side affects. Any advice would be handy, thanks in advance x

[AyrshireK]

Hi Freyaviking (great name by the way), there are a lot of folks on here with AIH but if you also do Facebook at all there is a fantastic support group on there with over 1400 members around the globe all of whom either have AIH themselves or like me are loved ones of AIH patients. The group is supported by many of the top boffins working on Auto Immune Hepatitis in the UK and as well as the Facebook page they regularly hold get togethers (small socials) or indeed larger almost conference style events - there is one coming up at the Queen Elizabeth Hospital in Birmingham.

Sadly the side effects from steroids (particularly prednisolone) are very common but they are a necessary evil to counteract any flare of the condition, hopefully as you progress along the journey they will reduce your steroids and introduce an immune suppressant thereby (hopefully) reducing some of the symptoms.

The Facebook group are very supportive and you'll be in the company of a lot of folks who have been exactly where you are now and can give good guidance on managing the condition and all it throws at you.

The page is at:- facebook.com/groups/AIHorgUK/ It is a private group so none of the rest of your circle of contacts see what you post or is posted on there and if you do Facebook you'll find it a good place to go for help, support, a laugh at times and a place to vent with people who know exactly what you are going through.

All the very best, Katie x

[Freyaviking in reply to AyrshireK]

Thanks for your reply, will definitely join the Facebook page, will be good talk to others xxx