Autoimmune heptitis

Hi this is my first post I have autoimmune hepititis for 9 yrs I find it a very lonely disease not knowing anyone with it I'm 58 yr old female would love to hear from others

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  • Hi Pussycat432, I don't know whether or not you do FACEBOOK but there is a very active AIH facebook page on there with some 800+ members on it at present. Its a closed group so only members can view postings etc. The group of AIH patients who run it are in regular contact with some of the top doctors and specialists in the UK on AIH and run various events through the year with some of these doctors coming to visit and give talks - one at Birmingham later this year.

    It's a really busy page and with world wide members there is always someone on there who can answer a question or share a rant or two.

    There are a few of the same folks on here but the AIH expertise is really over on the FACEBOOK page which is at:- facebook.com/groups/AIHorgU... . Same group also has a support site and forum but it has gone quiet after launch of the facebook page.

    Hope you find some of the help and support you want. For my part, it's my hubby who has cirrhosis due to burnt out AIH so we've been living with the illness for 4 years +.

    All the best, Katie x

  • Thankyou so much for replying katie no I don't have facebook only twitter. I'm not really into facebook as such I thought I would try here to see if I could get some support . I hope your hubby is doing ok xx

  • Yes this is a great place to ask questions and get support. There are people with AIH, Hepatitis C and B, Fatty Liver, Alcoholic Liver Disease and Cryptogenic etc etc...

    Some have fibrosis, cirrhosis, and some post transplant. Just keeping an eye on the posts every now and again, and you will get some really useful information and other peoples experiences. It also makes this disease feel much less lonely.

    Good Luck!

  • Thankyou

  • Dont be lonely Pussycat. Join this friendly Facebook group and meet 828 other people with Autoimmune Hepatitis.

    Im one of the Admin and im 59!

    I'm not 'into' Facebook' either and mainly use it for this group which is a closed group so nobody can see any of it apart from members.

    Alternatively the same group of people run a support forum on the web at autoimmunehepatitis.org.uk.

  • Ok thankyou

  • Hi Pussycat432, How are you?

    i am 30 yrs old and also have Auto Immune Hepatitis. i was diagnosed around 5 years ago. I also have Ulcerative Colitis.

  • Lovely to hear from you how are you doing ru in uk, I'm not feeling that well at moment I've got sinnitis an feeling very run down what meds are you taking

  • yeah i live in the UK. I have been taking Prednisolone and Azathioprine for AIH since diagnosed. Also on Infliximab for UC however the Prednisolone and Azathioprine also treat it. i have fatigue and recently had an iron infusion which seemed to help for around a day.

    Sorry to hear you aren't feeling well, i hope you feel better.

  • I get awful fatigue, but I would say worst thing is nausea and weight gain

  • Hi pussycat. Steroids can often be to blame for the weight gain. Have you tried "Slimming World" or "Weight Watchers"? Lots of ladies in the AIH Facebook page we mentioned have had great success with these programmes, losing up to 4 stone of "Prednisolone" weight.

    The nausea could be the Azathioprine/Imuran (assuming your liver enzyme levels are good). Are you taking it with a full meal rather than a snack? Or at night so the nausea hits while you are asleep. If the dose is 100mg some find splitting the dose to 50 in the morning and 50 at night eases the nausea.

  • Thankyou Bolly. I'm on 75 mg imuran an 5 mg which I take with my porridge every morning at 7am. I'm at moment trying to get in with my drs I'm feeling extremely unwell just been told no appointments until weds afternoon I have blood test I have got to have taken this week the drs can't do it as full up I've just rang my liver specialists secretary to ask for advice regarding my steriods dose nobody answering phone, feeling very ill and weak today all I want to know is should I alter dose of steriods

  • Thankyou bolly for answering I'm on 75 mg imuran an 5 mg pred. I was managing fine until got this chest infection last week an I'm now on very high dose eurothromycin 500mg trying to get help via phone calls to liver specialists secretary as to what to do next regarding steriod dose

  • Get my liver scan results in 3 weeks . Second liver scan, since diagnosed also I've had liver biopsy couple years ago

  • i had a liver biopsy when being diagnosed. Is your AIH in remission or do they have any kind of control of it?

  • I've been put back on pred 6m ago as had flare again after coming off the pred.i was on it originally for 9m but due to see liver specialist in 3 wks for scan results n blood results I have bloods done every 6 wks

  • Hi you won't feel alone here everyone kind caring and gives good advice I have.been away for a while as liver transplant on the cards for me second. Chance at life I wish you. All the.best and don't be alone Annette

  • Thanks so much Annette and good luck😘

  • my consultant tried to taper me from 5mg to 4mg Pred and within about a week the fatigue etc all started again. He then increased it back to 5mg and i have been on this ever since. My understanding is they prefer to stop the steroids and leave you on Azathioprine or something similar as there are less risks. They have not mentioned tapering me of again. However i did receive high doses of steroids recently for a bad flare up of UC.

  • Yes that's right as I was tapering down I felt unwell an came off no energy etc and almost knew I'd be put on them again. I'm on imuran 75mg an pred5 mg I'm losing my hair it's getting very thin, do you get nausea mine is constant

  • I went through my hair falling out with azathioprine and currently going through it again with the infliximab but it's even worse this time. Thankfully the first time round my hair came back in even thicker. Both consultants told me it happens with immunosuppresents and not to worry which obviously isn't easy.

    I don't really suffer with nausea, can they give you any anti sickness tablets? Might help you feel a little better

  • My liver specialist said he's never heard of thinning hair with immunosuppressants. I said it's definately thinner everyone has noticed he said steriods should make you hair in better condition, that's def not true my hair is awful since taking both tabs, I should ask for anti sickness tabs next time I see him

  • My hair grows alot faster but it's definately not in better condition. It feels quite coarse at the minute after all the recent medication. Is your hair still falling out, how long has it been falling out? I think stress and being unwell make it worse too. Strange how they can have such an opposite opinion

  • I checked an NHS website and it does say azathioprine can cause hair loss but it should grow back even if you continue to take the medication

  • The only way I can describe my hair is it's like splitting as if been bleached my hair has never been bleached at the ends an coming out a lot finer in last five years, I have my hair cut ever four weeks to trim ends as splitting badly

  • Hi, I am 58 and was diagnosed with AIH just over 5 years ago. I take 2 vitamin D tablets a day which helps with my hair and nails. I did have one period of hair loss and my consultant said it was one years loss in a month. Since then I have not had any more periods of loss.

    I am only on 100mg of Aza and was lucky to only be on Pred for the first 6 months.

    A good reduction plan for Pred was good for me. 8 Aza, then 8/7 on alternative days for a week. 7 for a week then 7/6 on alternative days for a week. Then 6 for a week until Inwas down to 1. It was then 0/1 for alternative days and the none.

    If you can get to the meeting in Birmingham later in the year you will be surprised how much information you can find out and also you are not alone.

    Hope you feel better soon x

  • Thanks for your reply. I take calcachew in mornings.at the moment I'm just getting over viral infection but have just got up no energy at all this morning. So it looks like another visit to my drs. I'm generally a very positive person but when you feel so ill it's difficult to isn't it

  • I must admit since I reduced my hours to 15 per week. 3 X 5 hrs. I have a sleep in the afternoon and am lucky not to have taken any time off work since I reduced my hours

  • I work 10 half hrs week now as I've reduced my hrs. I've just been to drs an been told have severe chest infection I'm v concerned as been given euthroymcin an told to take 2000 mg every day this seems so high dose,

  • Must admit I'm scared to take that amount since I'm on imuran n pred. I feel awful,

  • I after seeing the amount I went to ask pharmacist if they had made mistake but no it was on perscription, so I went back to dr as I've never seen him before he said that would be ok to take such high dose. I'm praying it dosent affect my liver levels much.

  • Hi! I am 65 and was diagnosed with autoimmune hepatitis 6 weeks ago. I am taking 50 milligrams of the drug Azathioprine. I was also diagnosed with PBC about 6 months ago. I am having a difficult time not knowing when I wake up each morning if I will feel well enough to fix breakfast for my husband and or to go anywhere, etc. We recently moved to Springfield, Missouri because there are a variety of outstanding doctors here. Pls keep in touch and know that I will pray for you.

  • sorry to hear that Allmysons12 , at the moment I can identify with you, although to be fair over the years I've coped with AIH pretty well, apart from fatigue/ nausea. Yes I will keep in touch, it really helps to be able to know that others are only a click away, at the moment I'm having a bad flare up but don't see my specialist until 9 aug I have chest infection which has wiped me out. But remaining positive as always

  • Good luck to you always. Annette

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