Living well with AIH

In one of the other threads about AIH Mama Lama said she wished that more of the readers of the AIH threads would post. So I thought I would - even though I confess I don't really have any issues and am not dealing with the major stuff all of you are facing. I am immensely moved by the other posts and the way you all handle this 'stuff'. I now understand why our doctors tell us that those of us with AIH should be grateful we have a liver disease that is controllable. We of course want it cured!

So, I was diagnosed with AIH back in 1999. I got an attack of acute hepatitis, went bright yellow, was very ill and after tests for viruses were negative they tested for AIH - and it was positive. It was brought under control with prednisolone then azathioprine was added. This was where the fun started for me! The prednisolone drove me nuts. I joked with the doctors that I collected all the bad side effects - but none of the good ones. They kept tell me that as the dose reduced things would get better but even on 1mg a day I couldn't function properly especially at work. Azathioprine also didn't suit me. I ended up in hospital from that! At this point my gastro realised I needed someone more knowledgeable than him and he referred me to a hepatologist who specialises in autoimmune liver diseases.

This was the best move - ever. I remain so grateful that my gastro realised his limitations so quickly. Hepatologist started me on CellCept (mycophenolate mofetil) and I have remained on it ever since. I was able to quickly come off the prednisolone and remained stable just on the mycophenolate.

I had one flare a few years ago - and that was brought under control with a different steroid called budesonide (brand names Entocort and Budenofalk). This was so much better than prednisolone and more and more doctors are now starting newly diagnosed patients on it. I still had some problems but they were bearable. But was only on it a few months.

Other than that my life has carried on and I am lucky that I don't suffer with the fatigue that plagues so many people with AIH and all liver disease. I work full time (although I am just taking early retirement as my hubby retires next year - a concept that is both exciting and scary), do not get many infections and as far as AIH is concerned I turn up every 6 months for my appointment and blood tests and just take the tablets. The last flare probably triggered cirrhosis (the ultrasounds and other tests indicate this but as a biopsy wouldn't change my treatment and I hate them it hasn't been formally confirmed) so I am on 6 monthly ultrasounds and 3 yearly endoscopies to pick up issues arising from that. But so far no problems. (With AIH there is every hope that the cirrhosis will not get worse or will get worse very slowly). Other than that I eat what I like (yes even beef...........) and just get on with life. I have also had the support of another online forum which has been very useful.

So thats me. Sorry I don't have a question but thought my 'success' story may help others diagnosed with AIH.


Ann

Hi Ann

Have got AIH too, since 08. Preds wasn´t enough for me and I also had really bad side effects but as I got side effects from aza I was put on chloroquine that did the work. Nice to hear your story. I know we are fortunate most of the times. I just wanted to ask you: how did you know you had a relapse? Was it when you checked your bloodwork or by symptoms? I got my AIH triggered by Remicade so I didn't get any other symptoms then just getting my liver tests high. A bit scared to get cirrhosis what kind of endoscopy do you do? haven´t had any ultrasound since the one i got when it started. My bloodwork have been good except that it increased when I tried to taper the preds down before the chloroquine. Were you on Cellcept when you had the flareup?

Glad you shared! Thanks.

Post Edited By Moderator (hep93) : 5/28/2012 3:02:14 PM (GMT-6)

I think I am pretty unusual in my initial presentation and in my flare in that I leaped from normal everything to really high ALTs and bilirubin very quickly. It is hard to ignore when you are bright yellow and feeling dreadful. My hep and I had already agreed and documented what we would do in the event of a flare so it was easy to get some urgent blood tests done and put the already agreed plan into action through my GP. So I saw my GP in the morning, she took blood and gave me a prescription for budesonide and called about 3 hours later to say the readings were back and were indeed very high and I should start taking the budesonide straight away. Then I got an urgent appointment to see my hep 2 days later (he is 100 miles away which is annoying when you feel ill!) and he took things from there.

I was on CellCept when I had the flare but...... with hindsight I had had a stomach bug for weeks and weeks (picked up in Africa on holiday). Nothing dreadful but enough my hep thinks to have stopped me absorbing enough CellCept to keep the AIH damped down. So I have learned from that episode and if anything like that happens again I'll have frequent checks. (But it hasn't stopped me travelling!). As well as introducing budesonide I also increased my CellCept dose back to 2000mg a day when I had the flare. I stayed on that for a good time and indeed have just dropped to 1500mg so I am currently on more frequent blood tests to monitor that reduction.

Not sure what you mean about what kind of endoscopy? If you mean upper or lower it was an upper. This found no varices but did show some early changes in the appearance of the stomach lining which would indicate possible cirrhosis. It was recommended that I didn't need a follow up one for 3 years. The 6 monthly ultra sounds started with the probable cirrhosis diagnosis. The main aim is to pick up HCC early (I also have AFP tests) but also to track any changes to the liver which is now very small and misshapen apparently. My hep explained that the risk of HCC is much much lower with AIH induced cirrhosis than with cirrhosis caused by Hep B or C but he likes to check anyway.

I didn't find the cirrhosis thing too scary once my hep explained that many people with AIH develop it without it causing any major issues. Far more scary was his suggestion of another biopsy to confirm it! When he said that my treatment would stay the same regardless of the result I declined the offer.

I hadn't met anyone taking chloroquine for AIH before. How do you find it? Do you still need pred as well?

Ann

Hi Ann,

Thanks for sharing!  I was like you...I had a whole lot of the bad pred side effects, except steroid induced diabetes.  I responded so well to treatment and, knowck on wood, haven't had a flare yet...that said I may have jinxed myself but it's been 5.5 yrs since diagnosis.  I live my life the way I always have.  I am also not plagued with extreme fatigue.  I eat red meat whenever I want to as well as sushi .  I try to hit the gym 4+ times a week.  I work full time and am a single mom.  I have 3 cats and change their litter even though I know some AIHers who say you shouldn't if you are on immunosuppressants (that whole toxoplasmosis fear but cats are much cleaner than they used to be)...and really, who else is gonna do it?!?   So it's nice to hear someone else is doing so well with AIH.  It's always good to have positive stories when newbies log in and feel lost and scared.

Ann, would you happen to be taking the LI Railroad and subway?

Hugs,
Connie

Connie - as I don't know where the LI railroad and subway are I doubt that I am!

To explain, I am in the UK and travel into London every day by train and then travel by Tube (subway) within London.

I hope therefore you will forgive the occasional British spelling (I just can't do it any other way). Other errors are explained by my typing when my fingers frequently lag behind or run ahead of my brain - but that's no excuse.

Dany - I am pleased there is someone else who doesn't get too many infections with the immunosuppressants - I wondered if it was me. Hope your cold clears up soon - it always amazes me how miserable you can feel when your nose is blocked up. Getting up at 5am is an aspect of my working life I won't miss! So to do it for the gym is very admirable.

Ann

Connie - I don't think the words 'London Tube' and 'clean' are ever used together! Every now and then they write a newspaper article and analyse what they find on the seats and handles. Even I now wash my hands as soon as I arrive at the office.................

Ann