I’m scared

[Olly_bb]

I have been diagnosed with autoimmune hepatitis and my consultant is saying that my most recent scan suggests more scaring than they previously thought . I need to stay on steroids now for longer and then reduce more slowly. My blood tests are all good and I feel well but this has scared me . I should have asked more questions

[AyrshireK]

Hi Olly_bb, have you joined the Auto Immune Hepatitis Uk Support page on Facebook - over 3500 members now all with AIH or like me supporting a loved one with the condition. It's a private group so no one else on your Facebook list can see what you post there and the support is brilliant - they are backed by some of the top specialists working in the field of AIH treatment & research and members also advised on the BLT page on AIH.

facebook.com/groups/AIHorgUK

All is not lost, providing they can get your actual inflammation under control with the steroids then hopefully they can slow or stop further progression of your scarring.

My hubby has cirrhosis due to AIH as do all the admin on the AIH Facebook page but all continue to live fulfilling lives.

Katie

[Olly_bb in reply to AyrshireK]

Thank you Katie your reply is reassuring x

[BritishLiverTrust1 Partner British Liver Trust]

Dear Ollu_bb

In addition to Katie's reply, if would find it helpful to speak to others with shared experience, you can register to join one of our Autoimmune virtual support groups here:

britishlivertrust.org.uk/vi...

In March, there will be a pharmacist-led session where there will be an opportunity to ask questions about medications, which you may also find useful.

Best wishes

British Liver Trust

[Colourist]

I know how you feel. My little bit of damage from A.I.H as was described by the Gastroenterologist who finally diagnosed me has been described now as Cirrhosis 2 years on. By my present Hep. I’m to scared to ask how bad it is. I’m retired so I distract myself by doing things I like to do. I was diagnosed in 2017 and was ill for 5 years before that. I just remind myself that I’m still alive!

[Olly_bb in reply to Colourist]

It’s awful isn’t it . I was only diagnosed August last year as I’ve had good blood results lately I was shocked to hear my liver is in worse shape than they thought (according to my most recent scan) . I’ve calmed down a bit today and put things in perspective. As you say im still here !

[Buddythezhu]

Don’t be scared, yes it’s scary at the start. I didn’t even know what AIH when I was diagnosed, hadn’t heard of it. I was diagnosed last year, I’m 61 never had a chronic illness in my life, don’t smoke or drink alcohol. I’m 6 months in, told I’ll be on steroids for a minimum of 2 years and immuno suppressants for life (probably). I’ve got used to it now, I lead a full life, just get a bit more tired more easily. Join the Facebook group they are wonderful.

[Olly_bb in reply to Buddythezhu]

Thanks for your reply I’m 67 and I think the older I get the more I worry about my health. I’m doing all I can now to be healthy even doing the couch to 5k . I’m just going to try and be positive and do what I enjoy. I’ll join the Facebook group too

[Charlieathome]

You can always go back and ask questions, keep a diary that's what we did for appointments and their outcomes. You will find that there are so many caring people in this forum. They are a brilliant support to me even now my sons journey is over..x 🌻