Autoimmune Hep Advise please

[Eternity6]

last week had liver biopsy went ok as well as it could, I’ve had auto hep for many years, on pred 5mg and aza 50mg, just come back from liver specialist new one ( to me ) and he was saying as my liver inflammation was rising from last month he’s putting me up to 40 Mg!!! And 75mg aza! I am she’ll shocked to be honest and I told him I was as I’m feeling good( not that you have to feel bad to go up to that dosage) bearing in mind he doesn’t get my liver biopsy results for 3 weeks, so hasn’t seen them, I will be going on 40mg and 75mg

, naturally I’m scared as even when diagnosed I was only on I think my highest was 20mg or maybe 15mg pred many years ago, could someone explain to me what it’s going to feel like going up that fast to such a high dose, he did say I will be having blood tests every two weeks which I remembered is the thing to do when starting dif dose, just need advice really!

[bleeny]

If it's any comfort to you I am taking 125mg of aza and am doing well on that dose. I have no side effects. Maybe you won't need to be on that dose of steroids for too long (with any luck).

[Eternity6 in reply to bleeny]

glad you are doing well on that dose that’s great to hear bleeny! What is your steriod dosage?

[bleeny in reply to Eternity6]

I was put on budesonide at diagnosis but only for a few months until the inflammation was under control. The steroids made me feel like superwoman with extra energy (and appetite unfortunately) but became a bit hairy! That soon went when the steroids were stopped.

[Eternity6 in reply to bleeny]

I’ve been on steriods continuous for years frizzy hair weight gain, 🙄 but as I said never 40mg hair falling out, oh the joys ! And constantly feeling nauseous that could have been the aza though not steriods! But I’m still here so that’s the main thing. Get biopsy results in month

[bleeny in reply to Eternity6]

Aza can cause nausea - some people say to take it at night so you sleep through it. I hope things improve and that the biopsy results are ok. The worst thing for me has been all the waiting for tests and results (made worse by them filing my biopsy results under the wrong name!)

[Eternity6 in reply to bleeny]

oh nooo filing your results under wrong name not good, but then it can happen as my husband got one of his prostate cancer results given over the phone and it was another’s man’s name nothing like my husbands surname

[bleeny in reply to Eternity6]

How awful!

[Belleben]

Hi, how did you find out you had auto help x

[exy21]

I take 75mg aza and have done for years. Also more than I need weight wise but it works. Steroids only when I have a flare to get bloods back down. I take aza with food/main meal never had any problems except after 17yrs my skin is now very thin.

[Mille23 in reply to exy21]

Hi exy21

How many flares up, have you had since you got AIH ? Was it 17 years ago ?

I have had 2 flares up the last year. I usually take Aza 50 mg , but with flares I take prednisone 5 mg. As I have osteoporosis , I am not happy for the steroids.

[exy21 in reply to Mille23]

Not too many. When I was diagnosed was on 50mg for 6 months and then weaned off. Lost track 4/5 maybe some short. Last one, last year was 4 months on 15mg. Going through menopause so brain fog.

Different illness but my mum is on a maintenance dose of 5mg for osteoporosis and has been for over 8yrs.

[Eternity6]

I was on 75 Mg few years ago and did ok to be honest but was on 5mg of pred and I’ve never taken 40mg and it’s that that is actually scaring me as I’m thinking that’s such a high dose from 5mg straight to that amount, he said that my auto hep was active and this is why he’s doing it, I didn’t actually ask whether being active means a flare, hopefully someone will come along and advise me, yrs my skin is thin I bruise really easily! Im actually feeling really well though at the monent

[exy21 in reply to Eternity6]

My bloods can be terrible but I can feel good and opposite for feeling awful. No rhyme or reason to AIH my specialist says.

[Eternity6 in reply to exy21]

yes that’s right really

[Readlots]

It might be worth talking to a pharmacist about the best way to increase your dose. I haven’t had any problems with Azathioprine, but whenever I have steroids for a flare up I have really weird dreams.

[exy21 in reply to Readlots]

Me too weird dreams.

[Eternity6]

when I have an increase I have full on nightmares that seem so real and can remember ever thing when wake up, I’ve never ever experienced nightmares in my life that was on 10 Mg of pred from 5mg, that’s another reason why I’m scared to take 40mg I don’t think it was the aza that caused them as I’ve been on 50 Mg aza for years

[exy21]

Ask that if you up Azathioprine as you tolerate it and you'll wait for results of biopsy before taking steriods? I don't tolerate steroids and only go on if no option and for shortest time I can. Specialist has it on my notes that I won't take unless no option.

[Eternity6 in reply to exy21]

oh really I e always taken pred as they say I should to be honest I’ve been on pred continuously for many many years.

[exy21 in reply to Eternity6]

5 is a "maintenance dose" and I know 2 people who are on that and will be for life. Just like I'll never be able to come of azathioprine, (try it bloods went through the roof). All meds have there side effects but if it keeps us going for longer hopefully.

[Eternity6 in reply to exy21]

yes that’s right I’ve been on 5 Mg for a long time got down to 1mg caught covid then up to 10 Mg steriods back down to 5 after many weeks now it seems I have flare oh well start again trying to keep positive