I'm new here and recently diagnosed with AIH but managing treatment is made more tricky as I live for most of the year in France so language is a bit of a problem. My own GP is very good and eager to improve his English so he will talk to me in English but I sometimes feel we are both missing something. My hospital consultant only speaks in French. I can understand about half of what he says as long as he speaks slowly but that isn't always the case.
I am 71 and never had a day's illness in my life apart from the usual coughs and colds. (I don't drink or smoke but am a little overweight.) A particularly persistent cough over Christmas 2018 seemed to take a long time to disappear and left me feeling tired and generally a bit low. This was exacerbated when my son died suddenly in February. This necessitated journeys to UK to sort things out which again. exhausted me. So I went to my GP. He ordered a blood test and an ultrasound on both my thyroid and liver.
The thyroid scans showed minor problems but the main concern was the liver for which I was referred to the consultant at the local hospital. He merely looked at the blood test results and ordered a liver biopsy for me to take place in April, a week before we were due to go to UK for my son's memorial service.
By the date of the biopsy I was beginning to feel quite well again and expected it to be a mere formality. However, after an initial routine blood test at the day clinic, I was immediately told I would have to come straight into hospital and have a cannula in my arm in case I needed an emergency transfusion as my blood clotting times were far too low to risk a biopsy or even let me go home. A cut or scratch could be life threatening.
I spent five days in hospital, feeling perfectly well and pleading with the doctors to let me go home in time for my trip to UK. They began by giving me 60mg a day of prednisolone and 100mg azarthioprine. Luckily, it worked sufficiently well to bring my clotting times up to an acceptable level and I went to UK for a week. In June the dosage had been reduced to 40mg and the consultant sent me back to the care of my own GP with instructions to gradually reduce the dosage until we reached a level that kept me stable. Naturally, I had begun to develop the side effects associated with taking steroids; oedema of the face and ankles, red blotches under the skin of my forearms, unsightly but not painful, and maybe coincidentally, gout in my right thumb joint which is very painful and prevents me from doing almost anything with my right hand. I have had that now for nearly two months despite taking anti-gout medication for three weeks which did absolutely nothing. Is it gout or something more connected with the AIH?
Now, at the beginning of August, I am down to 10mg of prednisolone but I am beginning to feel unwell again with the symptoms of tiredness, shaky hands, bad taste in the mouth etc that I had before being diagnosed so I think I might have gone too far with the reductions. Given that I am happy to continue with my present doctors despite the language difficulties, is there anyone else on this forum that can advise me with the benefit of their experience as to what I should be looking for or what questions I should be asking.
Thank you.