Auto immune Hepatitis

[camerashy]

Before I was diagnosed in March this year my liver readings were constantly high, then bak to normal and then high again. My doctor thinks I my have Auto immune hepatitis...along with everything else. Has anyone else been diagnosed along with GCA?

I am tapering my preds down to 6 mg at the moment but in the last few weeks my legs and hips have really been giving me the jips. Can hardly walk some days.

I am seeing the Rhuemy this week so I will see what she says

[PMRpro Ambassador]

I'd stop tapering for the moment - you aren't heading relentlessly to zero. You are looking for the lowest dose that manages your symptoms as well as the starting dose did - and I'd say you have got there. 7mg sounds like a place to have a month or so rest. Doesn't mean you won't get lower - just not yet.

[camerashy in reply to PMRpro]

Thank you for your insight...it certainly feels like I cannot go any lowe

Rehards

[joat]

I had a liver biopsy twenty years ago and was diagnosed with Chronic Active Hepatitis, then had three and a half years on Prednisilone. Have a scan each year. Have not had a recurrence but have developed PMRGCA.

[Marilyn1959]

Hi Camerashy. I have PMR and my husband had liver disease. My heart goes out to you if you are having to cope with both GCA and AIH? What were you diagnosed with in March? If it was GCA surely you would be on much higher dosage of pred? It is therefore no surprise to hear you are in pain if only taking 6mgs now??????

My first immediate thought, when reading 'My Doctor thinks I may have AIH', is that If I were in your position I would want to know for sure. Have you been referred to Liver specialist consultant? If not, why not?

Since reading your post I have looked up Auto Immune Hepatitis specifically and associated treatment regimes. I notice that pred is treatment used for both AIH and GCA. I wonder whether your fluctuating liver results coincide with changes in pred level intake? It might be worth keeping a diary to see if there is a pattern. Doctors won't always make the connections, especially if the doctor is looking at one set of information in isolation, rather than looking at things holistically. So you may need you to make the connections and point it out to them - hence the diary suggestion.

Be sure to mention your doctors thoughts re AIH to your Rheumy who may be able to support a referral to Liver consultant or indeed order some tests to explore himself. If he is not able to order the tests then insist your GP takes this responsibility by referring you to a liver specialist.

Some joined up thinking by professionals wouldn't go amiss here methinks.

Let us know outcome from Rheumy visit. Good Luck.

[camerashy in reply to Marilyn1959]

Hi Maralyn

Thank you so much for takIng the time to reply.

Have seen a liver specialist and he says I may have to have a liver biopsy, but will depend on my blood results again in 4 months.

I have come to the end of my tolerance levels on 6mg so I am just hanging on until I see the Rheumy on Friday...new symptoms this last few weeks are my hips

Thanks again

[Marilyn1959 in reply to camerashy]

Leaving four months between blood tests sounds positive. If they had major concerns this would be increased to monthly, if not weekly. So that is good.

Liver biopsies are par for the course with liver disease. Whilst by no means horrendous, if you do need one be sure to organise a friend to transport you to and from the day surgery appointment.

The main thing you need to watch for is ascites, which is a collection of fluid around the abdomen. You will first notice this as a 'spare tyre' around your middle, and if you are not aware of it may just accept this as weight gain. Ascites is usually treated with water retention tablets.

Hopefully none of the above will be relevant providing things are monitored regularly. The liver is one organ that can mend itself, so again all positive at present.

Be firm with Rheumy. Though if she / he knows about this disease (GCA/PMR), they should agree with consensus here that the pred needs to be increased at present if GCA / PMR is indeed the diagnosis?

[camerashy in reply to camerashy]

Thank you Marilyn

Funny you should mention spare Tyre..... I was thinking to myself that although I have put on weight ...I do have this spare tyre..not something I have been aware of before.

Thanks again Marilyn

[Rugger]

Were you diagnosed with PMR in March this year? If so, you have reduced very quickly to 7 / 6mg. I have just experienced what I think is my first flare after 14 months (painful hip and shoulder joints) and my GP suggested an increase from 4mg to 10mg! I see the Rheumatologist on Friday.

You have prompted me to write about a friend of mine who had GCA and AIH, but never spoke about her 'ailments'. I used to take her to her hospital appointments, but then we'd talk of other things. She died in her 80s of something else, so she's not here for me to ask more about her 'journey'. She was an amazing woman who had spent much of her childhood in an orphanage, where she contracted polio. She wrote 2 novels, drawing on her life experiences for the stories. Some people are inspirational!

[camerashy]

I started on 10mg for a few weeks and then was advised to become down 1mg per month.

Your friends sounds like a wonderful woman x

[piglette in reply to camerashy]

Hi Camerashy, were you diagnosed with PMR rather than GCA do you think? Starting at 10mg for GCA definitely does not sound right.