*waves* this may be a long story, but I'll try to keep it as short as possible!
Diagnosed with Autoimmune hepatitis in 2006 aged 15. Plodded along on azathioprine and prednisolone, with a few periods of non compliance and ups and downs with flare ups. Generally though in good health.
Around April 20 i started to get really bad hives. They started off abdomen/chest area but over the weeks that followed i was covered head to toe. GP prescribed Antihistamines which didn't work, so I had bloods taken in July where I had low platelets, raised ESR and CRP. GP panicked and told me to stop my medication as she believed it was a reaction to this. Referal was made to the hospital.
I had many blood tests done over the following weeks, platelets remained low and lots of other tests came back abnormal too. Ige came back REALLY high. They trialled me on steroids again, which raised the platelet count and stopped the hives. As soon as the dosage was decreased they came back. I was then referred to haematology who, over the phone, said it was my medication for the AIH, it couldn't possibly be anything else, and to continue having weekly bloods and she would speak to me again in 3 months!
Had to go back on Antihistamines to control the hives, ended up with 4 urine infections, blood and protein in my urine in dipstick test, plus visible blood in urine, headaches and migraines so bad I couldn't see and I was throwing up, joints became so painful I couldn't move them, and I was having constant pins and needles in my hands and in the end I lost feeling in my hands every morning for several weeks.
Liver doctor did a ultrasound and fibroscan, showing enlarged spleen, portal hypertension, cirrhosis of the liver and thickened gallbladder. They believe its because of the no medication for 7 months!
I was then referred to Birmingham for my AIH as my local doctor could no longer treat me as it had advanced so much without the medication. At this point the haematologist decided I now needed a bone marrow biopsy done before I was seen at Birmingham! That was done 4 weeks ago and I'm still awaiting the results.
Birmingham were brilliant and did a whole range of blood tests. They rang me a few days later to say that I had tested positive for p-ANCA and had a very strong positive for MPO antibody. They said as my kidney function looks ok, they believe it to be vasculitis.
Thats as much as I know for now! I'm being seen again next week (9th Feb) and don't know what to ask! I've been started on tacrolimus and prednisolone for my AIH, but they want to change the tacrolimus to mycophenolate instead as this is better for vasculitis they said. My hives, headaches, joint pain and nerve weakness has all eased since I was restarted on the prednisolone at 20mg.
Sorry its been so long! Any advice is greatly appreciated! I don't know what questions to ask when I go back to Birmingham and don't know what to expect from all this really!