Autoimmune Hepatitis Type I

[Equestriannut]

Good morning everyone. This is my first post so here goes:

I have been diagnosed with Autoimmune Hepatitis Type I, Fibromyalgia and Nodal Osteoarthritis. I spend everyday in a great deal of pain and I really don't know which way to turn. I had a liver biopsy done in December 2016 which caused a massive bleed in my liver capsule and was hospitalized for a week on very strong pain killers that made everything taste disgusting, 2 units of blood and constant blood tests. I lost half a stone in that week, had 6 months off of work as it took me a long time to get my strength back and have only just now started putting on weight. I was on steroids to start with but now I only take Azathioprine for AIH. I have been seen by a Rheumatologist and an Orthopaedic surgeon for my joint and muscle pain but no one has given me any help at all. I have seen a private physiotherapist, had accupuncture and seen a chiropractor, all at my own expense which helps slightly but i cant afford to go as often as i feel i need to. I have also taken supplements Vitamin D, Vitamin B complex, Rosehip and Glucosamin but alas I am still in pain. I have good days and bad ones and then really bad ones when i feel like a cripple. I still work 22 hours a week as a secretary and get a great deal of pain sitting down for too long. I am now awaiting an appointment in my local pain clinic but that is not until December. As i said at the beginning I just don't know where to turn next. Has anyone else got the same problems? any advice? HELP!

[GrandmaDylan]

You poor love. You've certainly hit the jackpot with all your medical conditions. I have had fibromyalgia for about 16 years and unfortunately it has got worse not better. I take amitriptyline at night and also dihydracodein at night in a vain hope it will help me sleep. I can't take it during the day as it knocks me out. I fell asleep at the wheel once. Only for a second but it frightened me to death. I have a diagnosis of cirrhosis, I don't know yet what it is caused by as I am a non drinker. I am type 2 diabetic and have OA. What is nodal osteoarthritis? Hopefully someone with more knowledge of AI will be help you more. Take care. Deb

[Hidden]

Hello horse lover 🐎

Poor poor you that doesn’t sound nice at all😦

It is way beyond my experience si really cannot comment. But there are do many knowledgeable peeps on here i am sure you will get some advice.

Good luck!!!

[AyrshireK]

Hello Equestriannut, I don't know whether you also do Facebook or not but there is a fantastic Auto-Immune Hepatitis support group on there. Numbering in excess of 1800 members from around the world there are people at all stages of diagnosis and many who have various multiple diagnosis's. Group is moderated by fellow AIH patients and supported by some of the top doctors in the UK (world) who are working in the field of AIH treatment and research. It's a closed group so no one else on your newsfeed sees what you write or read. Well worth joining for support and advice and you might find others in a very similar situation to yourself.

Page can be found at :- facebook.com/groups/AIHorgUK/

All the best, Katie