I honestly cant remember how long I tried it for. Usually I give things 3 months unless there are clear signs it isn't for me. Ann...
I did try it once - got very bored and it did absolutely nothing for my bloods or how I felt. So I stopped....
My only issue with CellCept (I have been taking it since 2003) was diarrhoea - and even that went after a while. But speaking to a hep the other day she said that quite a few of her transplant...
Hi I too have AIH - diagnosed in 1999. Antibodies in AIH can be complex (lets face it most things about AIH are complex!). I have never tested positive for ANA but do for SMA - but then so do lots of...
Hi Loujay As you are finding out lots of things seem able to send liver readings out of kilter. There are a number of autoimmune liver diseases where our own bodies attack the liver or bile ducts for...
6-MP is also called mercaptopurine. You are completely correct AutoHepMom - the body converts Imuran into 6-MP. Even though they are very similar some people who can't tolerate Imuran can take 6-MP....
Hi Sorry to hear things are not improving. Interpreting biopsies is more of an art than a science so it is not uncommon for different doctors to get to slightly different conclusions on level if...
Hi there Looks to me like they think it is AIH but I would double check with them. Most people with AIH test positive for certain antibodies and that can go a long way to clinch the diagnosis. But...
Drug reactions can be as severe as this according to my hep and induce symptoms very similar to AIH. The fact that her enzymes are returning to normal without any treatment and she tested negative...
Hi there Hang on in there. It often takes some time to find the right mix of medication to control the AIH. And a hepatologist is the expert who can help you find this. He or she may for example add...
It can take some people quite a time to find the combination of medications that work for them to bring the enzymes down. A good hep experienced in AIH will be able to try different combinations and...
Hope things look up soon. I have not heard of this being related to AIH so I suspect it was an unhappy coincidence. Ann...
Hi and welcome Pleased you are so well. Remission can mean normal readings etc with or without meds so it gets a bit confusing. There are a very few people who after several years of treatment are...
Chris I know you have posted on an AIH forum and I have just replied to your there. I won't repeat what I said there but in summary I suggest you try and find a hepatologist who specialises in...
Hi there My own experience was that it took a good few months to feel better. My logic was that the initial illness had drained my reserves and it took awhile for them to refill. Add in getting used...
The raised BP may be due to the pred so may well drop. I confess mine didn't drop when I came off pred but could be I was developing high blood pressure anyway! I take ramipril for it by the way -...
I have known people without liver problems have exactly these issues with statins so I think it is certainly possible it is that if that's any use. Ann...
The standard initial treatment for AIH is a steroid (either prednisone or Budesonide) - this is because the steroid works to quickly damp down the inflammation and so stop the damage quickly. Then an...
At the beginning I was really really tired. I felt like I had walked into a brick wall (is that an English saying? Anyway you can guess what it means!). Then I started on the meds and had to deal...
I tried acupuncture for AIH - didn't do a thing for me. I would never ever go near herbs to be honest. Some people get liver damage with only mildly raised ALTs - doesn't seem to be any link in AIH...
There aren't many people here with AIH so I suspect no one can answer your specific question. It does sound to me like its possible the active ingredient has been absorbed too quickly - although I...
Yes get copies of your results. As well as liver function tests for AIH they do a lot of tests looking for antibodies. This shows something is amiss and could be linked to autoimmune problems. Some...
Hi Sharon Can't add much to what Dany said. I have had AIH for 16 years now. Live a normal life, It is a shock at first but generally people with AIH do very well. But it takes a bit of time to get...
Usual advice with AIH is to eat healthily. No need to cut out foods or anything unless you develop end stage liver disease or ascites which is rare with AIH. Having said that different people find...
The real damage to me occurred when I flared after being off meds for 2 years and my local gastro didn't treat it aggressively enough. I am now looked after by a specialist liver unit who are really...
Hi Erin If you click on my screen name 'AIHer' in blue (or pink) to the left of this you will find my email address. Send me an email and I will let you have details of the website, forum and...
I have only had biopsies to inform treatment decisions being considered. My hep doesn't do them routinely either Dany. But I know some do. More heps are using fibroscans now I find. Although they...
I have had AIH for 15 years - been on mycophenolate (CellCept) for 12. I am really well I confess! My heps view is that if people fit certain criteria (completely normal bloods on meds for some time,...
Hi Erin I have been taking CellCept for 12 years now and find it great. The one side effect I did get was slight diarrhoea - easily controlled with Imodium. But even that has eased now and I rarely...
I am so sorry to hear of your loss Cydney. It is immensely sad that the AIH developed so severely so fast that the treatment was not possible. Remember this forum is here for you. Ann...
Hi there Mycophenolate mofetil (CellCept) is used quite often in AIH especially when azathioprine (Imuran) doesn't work or people can't tolerate it. It works well for most people. It is used after...
Hi Maggie Not UK then but I do know a few people from Ireland with AIH. I think my main advice would be to try and limit the weight gain. Really really hard when taking steroids as you are constantly...
And in case you hadn't guessed I am the person Mama Lama referred to! I moderate an AIH forum and am setting up a Support Group for AIH as well....
Hi Maggie Welcome. It can be very scary at first but AIH is very liveable with. I have had it for 15 years now and really get on with things fine. But it is a controllable condition not curable. So...
Sorry to hear you are having such hassle from your 'friends'. Take the advice offered here and hopefully things will get better. The first stage of treating AIH can take time. But most people find a...
Hi I thought I would update people on the progress of the UK looking at the prescribing of Sovaldi. The process for any major new drug is that a decision is made whether to fund it or not based on a...
Interesting about new med. Remember that whilst it is of the same group Mike had so many problems with - it isn't the same med so keeping fingers crossed everything will be well. It is weird how...
Hi there and welcome As Dany said I have done pretty well with AIH. Took a bit of time to find the right immunosuppressant for me and pred and I did not get on at all. But I am well on a drug called...
I typed my question before I saw your latest post as you may have guessed!...
Hi there and welcome As you have probably been told PSC is autoimmune in nature but attacks the bile ducts rather than the liver as in autoimmune hepatitis. Steroids and immunosuppressant treatment...
Hi Sean You may be interested in details of this stem cell research and trial: http://fp7merlin.eu Whilst specifically aimed at PSC my hep (who is one of the researchers) has confirmed that, if it...
A further update. The English NHS issued new guidance yesterday. Whilst the body that decides on cost effectiveness of treatments considers Sovaldi they have made money available (£19m - about $30m I...
Welcome ugpred. Glad to hear you are doing OK. Seems your doctor did exactly the right thing and you are in good hands as well. The causes of AIH are frankly barely understood at all. They think that...
It looks to me like the docs are doing all the right things and the fact you have had all those tests seems to rule out most stuff. At the end of the day the raised readings may just be 'one of those...
Just to clarify, the UK body that agrees whether or not meds are cost effective hasn't actually reported yet on Sovaldi. Their draft conclusions are due in May then there will be lots of further...
Hi brokenarrow Welcome. It can be very frightening to start with can't it? And doubly so if your doctors can't get their act together and talk to you - and each other. If it is any consolation whilst...
Hi there I have had AIH for nearly 15 years now. Once I found the right medication to control it I have been well and apart from a minor bump or two have been fine. So hang on in there. Most people...
To follow up Dany's point I know a couple of people who are on tac for AIH so I too would think that they would probably be able to control the AIH with tac plus an increased steroid of some sort IF...
Hi Susie I did a quick scout round the internet. It is true AIH can recur after transplant but I also found cases of people developing for the first time after a transplant for something else (google...
Just a couple of things I'd add to the replies you have had. The test for tolerance of azathioprine is far from perfect. My TPMT test came back negative meaning I should be OK on it. I developed...