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Posted 5/15/2013 6:44 PM (GMT 0)
Any posts on autoimmune diseases especially autoimmune hepatitis?
Posted 5/15/2013 7:36 PM (GMT 0)
Welcome. Yep quite a few. If you look at the blur bar above (the one that starts with 'log off' on the left hand side and ends with 'Help' on the right hand side) you will a heading for 'search'. If you click on that you can search for other posts.

One of the moderators Dany has AIH and is very knowledgeable and I too have it and know a bit so if you have any specific questions please ask away.

Do you have AIH? If so tell us a bit about your experiences.

I was diagnosed some 14 years ago now. Usually well controlled on mycophenolate mofetil. Readings have been a bit whacky of late so my hep is wondering about possible overlap with PBC or PSC and is doing further tests. I have developed cirrhosis as a result but that doesn't seem to be a problem. In general I just swallow the tablets and lead a normal life. Others I know have long term fatigue issues.

Ann
Posted 5/15/2013 10:01 PM (GMT 0)
Hi l-n,

Welcome to the forum.

I'll send an email to our moderator with aih...Dany.

We'll be anxious to hear more about your symptoms, labs, and meds.

Ann's suggestion is a good one...use the search feature.

And there are several good sites listed under resources up top as well.

Best,
MamaLama
Posted 5/17/2013 3:44 AM (GMT 0)
AIH here too, mine is under control and I take prednisone tapered down to 5mg a day, but I have a lot of aches and stiffness. I saw a rheumatologist nothing but normal wear and tear. I can't believe that normal wear and tear has this much pain. I was diagnosed in 2010 (liver biopsy). I have some petachia on my legs and red blotches onth upper body but according to my research it is associated with the AIH but still going to see a dermatologist. There is a lot of information out there, but it is scattered. A lot of doctors are not familiar with AIH. I see a Gastroentrologist/hepatologist doctor. He still has to call a friend at Duke to consult with him which is fine with me. I'm male and want to know if anyone else has these issues. Thanks!
Posted 5/17/2013 5:59 AM (GMT 0)
Hi there - I don't have these aches and pains but know lots of people with AIH who do. Sometimes it is linked to the pred - a too fast reduction can trigger it - and the 'correct' speed of reduction of the dose is a very personal thing. Some people I know have found it takes a good couple of years for the aches to diminish.

Most people with these symptoms find they need to pace themselves - some I know use a product called Biofreeze (available from shops here in the UK but tends to be sold online or via physical therapists in the US I think) which they find helps the aches - but some find it has no effect.

I assume the rheumatologist tested for autoimmune rheumatic diseases such as lupus, RA etc. Often as you probably know autoimmune diseases come in twos and threes. My only other thought is whether the rheumy tested you for fibromyalgia.

What does your gastro say? My hep always says that you are not in remission in AIH until all your readings are normal and you feel OK - it can be tempting for doctors to ignore the latter part and just go by the results.

Dany may have more ideas.

Ann
Posted 5/17/2013 5:39 PM (GMT 0)
I, like Ann, am lucky and am living a perfectly normal life with AIH.  My hands occasionally get achy but they were achy for years before my diagnosis and the reason I had been seeing a rheumy (my ANAs were elevated in 2003 but only diganosed with AIH in 2007).  You can find BioFreeze here (USA) in some pharmacies but I know I saw it at a chiropractor's office too...it might just be easier to order it online.

I agree with Ann, a lot of the AIH achiness is from a too rapid reduction in pred.  Sometimes folks are reduced very slowly because of the joint pain.  I would definitely request from the rheumy to test you for other rheumatic autoimmune disorders whose doors may have opened up with the AIH diagnosis.

It sounds like you are proactive in having your side effects checked by the appropriate specialists which is all you can do.  Pred causes thinning of the skin so it is possible that is causing your derm issues.  Have you had a bone density test?  I ask since you've been on pred for almost 3 yrs (I'm assuming from your date of diagnosis).  It causes bone thinning as well.  Now that you are on 5mg, be sure your wean to zero is VERY slow.  This is the most important wean after stabilizng, in my opinion.  This one is to jump start your adrenal glands as they have been dormant with the steroid meds. 

Are you also on azathioprine or another immunosuppressant?

Posted 5/17/2013 6:48 PM (GMT 0)
I tapered down for two months from 20mg to five. My gastro also my hepa wants to taper down to zero after last visited but soon after changed his mind and wants to do biopsy again bc my blood test are norm and we discussed at least another reduction so I think after the comments I will reduce using three or four months instead of two to 3mg or 1.5mg maybe in combo with imuran. My rheum tested supposedly for everything ( 8 viles of blood) said my testorine was high and platelets low and wants me to see hema , can't get much out of them so I will probably change that rheum to another. The place where the blood is going to be drawn is a cancer facility. My platelets have been low and my testorine should be jumping too bc of the pred but I guess this is just a better safe than sorry test. Like I said I can't never seem to talk to her only sher nurse by voice mail even that service is lacking bc no one returns my calls and if they do it is two or four days later. Like I said though the pain is preventing me to keep from working full time because of the physical nature of my job. (CNA). If I could just get rid of this pain im going to work 50 or 60 hrs a week bc I can and have bills etc. I miss so bad having a full time job but like I said the pain from working just two days is bad, I mean tough getting out of bed bad. Im doing stretches limiting anything physical bc I know the consequences. I have had a bone scan and it was normal according to the doc. I take calcium, vit c, fish oil , pred, everyday. I have been trying instaflex but with no luck. I could write on and on but don't want to put anyone to sleep.

Thanks!

Posted 5/22/2013 5:12 AM (GMT 0)
Time2010,
Sorry for delay writing back, I've been swamped. Are your LFTs normal and were they normal when you started tapering from 20mg? 20mg is actually on the low end for starting treatment. So did I understand you correctly and you're not on Imuran/azathioprine yet?
Posted 5/22/2013 11:22 PM (GMT 0)
No problem, my LFT was 3.6 on a range from 0 to 8.3 Inside that range is normal and when I started tapering down. I started on a large dose for about a week, then a little less , and less etc until I got to 20 mg and maintained that for a year and four months then I tapered down to 5mg over I think it was two months. Not on Imuran or the I think generic name azathioprine.
Posted 5/23/2013 2:12 AM (GMT 0)
When did the pain start? I just wonder if it was from being on 20mg for over a year then weaning to 5mg in 2 months...that's a low dose to start but a high dose to be on for so long! I'm betting your pain started when you got to 5mg?
Azathioprine is considered a 'steroid-sparing' medication and will help you wean off the pred more easily. I'm very surprised they didn't put you on it a long time ago. I would definitely discuss it with your docs before you wean any further.

Generally the 5mg to zero wean should be the longest. I did mine in 2 months. A 1mg drop every 2 weeks with a blood test before each decrease. It's to allow your adrenals to bounce back into action.
Posted 5/23/2013 9:52 PM (GMT 0)
It started after the reduction. We have discussed the pred / Azathioprine combo and are suppose to revisit the meds after Junes blood tests. I just know Im ready to get off the pred or at least take the min possible. I wish I knew all this before , it would have made things just a little less complicated. Thanks!
Posted 5/28/2013 9:46 PM (GMT 0)
Hi To All! I am new to this site. I have AIH. Dx Feb 2012. Labs have been consistently good for over a year. Currently on 5mg daily Prednisone & 50mg daily mercaptopurine (6mp). Tried Imuran but I could not tolerate it. Made me very sick! Per my hep I will start my pred taper in fall2013. At that time my 6 mp will go up to 75mg daily. I also belong to AIH FB group. Just trying to communicate with others that have this same chronic condition! If anyone out there can share their experience with a prednisone wean and also 6 mp experience! Thanks so much! Mary age 58 female
Posted 5/28/2013 9:56 PM (GMT 0)
Hi, Mbsunny/Mary, and welcome to the forum. I will alert my co-moderator, Dany, to your post, as she has AIH and can share her experience with prednisone taper. Good to hear that you are doing well.

Hugs,
Connie
Posted 5/28/2013 10:03 PM (GMT 0)
Thx so much Hep93!!!
Posted 5/29/2013 7:55 AM (GMT 0)
Hi Mary

I am sure Dany will be along soon. I have had AIH for about 13 years now. Pred made me 'wild' and I too couldn't take azathioprine (Imuran) but am well on mycophenolate (CellCept) although may need to add a different steroid again as my readings are creeping up.

I know loads of people with AIH from a different forum and the secret with the pred taper seems to be to take it really really slowly to avoid the painful joints that some people get and get your adrenal gland working properly again. If you can get hold of the 1mg tablets then do it in 1mg increments. Some people even go as slow as reducing by 1mg a month - but 1mg every 2 weeks is probably the average - with regular blood tests. Don't be afraid to go slower, pause the reduction or even put it up for a time.

6MP seems to suit a lot of people (as your hep has probably explained it is azathioprine minus one enzyme) and I know several on it who do very well. Some have minor stomach problems which are resolved by taking it with food.

Ann
Posted 5/29/2013 4:58 PM (GMT 0)

Hi Mary!

Ditto, ditto, ditto what Ann said :-)    My pred wean took 2 months.  A 1mg drop every 2 weeks with a blood test before each drop to make sure my levels didn't creep up at all.  I was on azathioprine at the time and about a month prior to the wean, we bumped me up to 100mg from 50mg.  Since you're tolerating the 6-MP, you should be fine with bumping it up but bumping it up a little while before the pred wean will make sure you don't have trouble with that.  You don't want to have issues increasing the 6-MP and dropping pred at the same time...so best to take make changes that can be teased apart to sort out troubles, if troubles occur...does that make sense?

Posted 4/6/2014 1:25 AM (GMT 0)
Yes, I also have autoimmune hepatitis and diagnosed early November 2013 and I dont like what comes with it!
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