A general NHS/GP moan and my experience of HA

Digestive health
1

I have had HA for going on 7 years. Initially - after a long period of feeling really unwell and being constantly asked if I had a drink problem by my GPs which I don't and never have had - I turn yellow and spent weeks in hospital with HA. Considering my history of polyglandular autoimmune (11 years) I rather feel that someone, during routine hospital appointments and the surgery should have guessed that I have HA. I am now feeling absolutely desperate. I have had a bad reaction to every immunosuppressant prescribed to me which, due to them affecting my stomach badly, I have had to come off even when they have brought my LFT's back to normal. I have just come off prograf due to swelling legs and feet etc and generally feeling really ill. I am on 20mg (started on 60mg) prednisolone and they too are having a bad effect on me - I know I cannot come off them. I have just had another liver biopsy and was told that I have a little scarring - which amazed and delighted me - no cirrhosis which also amazed and delighted me considering the length of time it is taking to get this condition under control and that if I could tolerate an immunosuppressant I would eventually get well again. The prognosis if they do not find one I can tolerate is not good. I too have a GP who knows nothing of this chronic condition and really does not want to ar*ed finding anything out about it and just keeps telling me to ask the consultants at the hospital and we all know what that means in the UK. Constant battles with jumped up secretaries, conflicting information and being treated like a bloody nuisance for having the temerity to ask questions. Sometimes I feel like a boat adrift as sea - I truly have no confidence in my GPs or the hospital anymore.

Thank you for reading this general moan.

2

I was diagnosed with AIH 8 years ago. I too could not tolerate prednisone. Eventually, my gastroenterologist put me on a combination of prograf and cellcept and my AIH went into remission and has stayed in remission for 5 years now. Try asking for cellcept (very expensive but worth it). It worked for me and was much better than prednisone (which is the drug from hell).

3

Jean - my heart goes out to you. I have a stomach the size of a 7 month pregnant woman, and know that there's something wrong with my liver. The enzymes are way too high, and try as I might, I cannot lose weight. I feel tired all the time, and have to try and stay cheerful in front of my 2 young teenage children. I've had an ultra-sound scan which showed my liver looked fine, but now further tests are imminent. I don't want a liver biopsy doing. It can make things worse, but just want to feel fit again. I get very depressed, but hide it well. All the best to you.

4

Yes. CellCept is the best choice when other medications have an adverse effect on you. I've been only on CellCept for almost three years now, and

so far I've had no problems whatsoever.