I have Autoimmune Hepatitis (Inflaimmation of the Liver)...

Hi - I have had auto-immune chronic active hepatitis for more than 12 years and from time to time have "flare-ups" which require highish doses of prednisolone to reduce the inflammation. For the major part the disease is managed with 6-Mercaptopurine because I can't tolerate Azathioprine (probably mis-spelt!) Yes, there are side-effects from Pred., but without it the inflammation will cause extensive scarring to the liver and in time, can develop into cirrhosis so......... In 2003 I was told that I do have established cirrhosis and am currently in a "flare up" but I willingly accept Pred. and the difficulties of insomnia (I have been without sleep for the last 22 hours), hunger, bone thinning, chubby face, heart flutters and so on, because it does dampen the inflammation and keeps my damaged liver functioning a bit longer.

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HI Comment 12,

Please keep an eye on your hip pain. Just investigating side effects of P and this could also be a side efeect. See Comment 28 for info.

Take care.

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Hi people I to have auto imunne liver disease and cirhosis. I take pred and cellcept. I am also seeing a rhumatologist because he feels I have athritis aswell! so with the combined liver specialists and bone specialists I recieve excellent care for both. I have a once a week tablet alendronate to enable the bones to retain the calcium and two daily calcium and vit d tabs also I take yoghourts and milk to maintain my bones and exercise. I have also had a bone scan. I would advise anyone on pred long term to have a bone scan and to up their intake of calcium. My bone specialist said the current thinking is that anyone on 5mg pred daily long term ( and higher) requires a once a week calcium tab alendronate or similar. Pred is a wonder drug in the short term and a lifesaver but requires carefull management long term.

I am interested in anyones experiences about steroid reduction and the side effects. Also there is a wonderfull web site for those with liver disease autoimunne hepatitus co.uk. :D

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i have membranous glomerounephritis and have to take at the moment 30 mgs of pred,but i ony take resedronate once a week!i do have regular blood tests(every 4 weeks)my steriod doseage has come down from 60 mgs to it's current level and i am hoping for it to come down further,but i know this is going to be a long haul

I have been diagnosed with AIH for about a 10 months now - after being on budesonide for 8 months I have been on predisolone for the last 2 and azathioprine for the last four months - my dosage of pred has gone down from 40mg to 30mg this week and azathioprine from 75mg to 150mg- today i feel awful- whether its AIH or the change in drugs i don't know. I am so unhappy as I am trying to hold down a high profile job ( recently I have had to step down from full time to three days as I was struggling with being consistent . Instead and things getting better I feel I am still in the same position as last year. I have know idea what the Azathioprine does as I felt no different when I started it - the differenc ewith Predisolone was very evident - sleepless nights, hyper activity, shortness of temper, weight gain etc. So I really don't know what effect Azathioprine has unless it has made me feel terrible today. I am seeing the consultant again in two weeks -my local GP is fully booked. I just feel that the professionals give you very little advice on how these drugs affect your day to day existence so when you feel different you haven't a clue whether it is something serious or just a side effect or whether you should be concerned and do anything about it. Not much help I know but I think we are just meant to put up with it- It seems sometimes the drugs just make things worse.

hi i am diagnosed with hepititus b about 9 months ago,the doctor said you do not need medication now just do your tests every 3 -6 months to see whats going on.since then i had tests 3 time ,at first the h b sag was +ve and pcr was positive but now hbsag is still +ve but pcr is -ve,what does that mean???? if some know pls and does hepititus b effects life span as some GP,S say it effets but some say it does effects????

hello everyone,

I have just been diagnosed with AIH at 61yrs old and a person who abhors the thought of taking steroids and experiencing some of these side effects. I have been put on Entocort 3mg capsules(1x100Budesonide) (3 to be taken daily) and to see the consultant again in 2 months time. He said it was caught in time before any scarring to the liver, I think I was still in shock and didn't really ask him much. I had been feeling much better since my jaundice attack in May and blood tests seemed to be slowly improving. I had visited India the previous year and they seemed to first think it was Hep E. I had an ultra scan and blood tests but not a biopsy and although they are saying now it's AIH wondered if anyone has been misdiagnosed and will these meds make it worse. I suppose I am clutching at straws and still feel very confused by it all.

I noticed that this was written a while ago.  How have thigs progressed