French translation

[gertrudestein]

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.

[Isabelle2]

No but I could translate whatever you need translated. I had a liver transplant in June 17 and have lived there for too many years to remember . All this I went through in French. Where are you in France?

Isabelle

[gertrudestein in reply to Isabelle2]

Thanks for replying. I live up in the Alps - nearest hospital is Albertville. I have a neighbour who is German but speaks fluent English and French. She came with me once to the GP but I don't like to impose on her too much.

The sort of questions I need answers to are: am I right to self-determine the reduction in dosage or should I visit my GP regularly, preferably after a blood test, to determine what the level of dose should be? Is the aim to get the dosage as low as possible? Is this prolonged spell of gout in the thumb joint a known side effect of AIH? If I can find a suitable level of dosage, is it OK to continue with that level for the rest of my life or are the side effects something I may have to put up with eventually?

[Isabelle2 in reply to gertrudestein]

I’ll send you in a perso message what you have to say for each of these. Give me a day or so. On hols in uk

Izzy

[AyrshireK]

Your steroid reduction should be monitored and at the same time as reducing steroids an immune-suppressant should be introduced to keep your immune system under control long term. A common description of meds with AIH - steroids act as a fire extinguisher to put out the initial fire (or flare of inflammation), as steroids are reduced (only once inflammation is coming under control) then an immune suppressant is introduced to act as a sprinkler system to keep the fire from re-igniting. Some people have a lot more symptoms under 10mg and the reduction should be a lot slower from 10mg down - it takes a while for your body to start making it's own cortisol. Some people need to remain on around 5mg daily if the body can't make enough cortisol.

The British Liver Trust has an excellent page on Auto Immune Hepatitis at:- britishlivertrust.org.uk/li...

If you do Facebook at all there is a fantastic AIH support group with has over 2000 members, although UK based there are members from all round the world so you might find other patients in France or bilingual folks who can help with translation. facebook.com/groups/AIHorgUK/

Best wishes,

Katie

[gertrudestein in reply to AyrshireK]

Thanks for replying. I was given the immune suppressant alongside the preds right from the start and I'm still taking that at the full dose originally prescribed. I had already read the British Liver Trust web pages and found them useful.

I think my next step is to have a blood test done ASAP and when I have the results, see what my GP thinks. Any thoughts on the gouty thumb?

Yours Gertrude