Would like to know about other AIH sufferers, what other immune illnesses do you all have?
Hi Lynn,
I was diagnosed with AIH in May 04, because mine is drug induced I have no other AutoImmune diseases, other than the ones (high blood pressure, border line diabetis) that the Prednsione causes. So I am lucky. I was finally off of Prednisone for 5 months after a 2 1/2 year run, when I had Gallbladder surgery and now I relapsed for the 3rd time. So I am back on Prednisone, 10mg and probably will be on some type of maintence dose for the rest of my life.
Good luck in your AIH treatment and i hope all goes well with you. Maybe you will be able to attend the AIH conference in June 2008 in Chicago. Go to the website: AIHConference2008.com for more information.
Until next time, Deb
Hi Lynn,
I was diagnosed with AIH in May 04, because mine is drug induced I have no other AutoImmune diseases, other than the ones (high blood pressure, border line diabetis) that the Prednsione causes. So I am lucky. I was finally off of Prednisone for 5 months after a 2 1/2 year run, when I had Gallbladder surgery and now I relapsed for the 3rd time. So I am back on Prednisone, 10mg and probably will be on some type of maintence dose for the rest of my life.
Good luck in your AIH treatment and i hope all goes well with you. Maybe you will be able to attend the AIH conference in June 2008 in Chicago. Go to the website: AIHConference2008.com for more information.
Until next time, Deb
Other autoimmune disorders: celiac disease and interstitital cystitis, which was successfuily treated.
Hypertension has become far worse since prednisone, and I developed osteoporosis, perhaps from Prednisone and perhaps from celiac disease – or more likely from both.
I’m doing well with treatment for all the above problems, but hypertension is really difficult for me to deal with.
Also, I’ve not lost the weight I gained in the early stages of Prednisone treatment.
Thanks for the note. I am definitely going to try to get to the
conference. When I originally heard about it, I thought it was this
June & knew I couldn’t go (too much going on in June & July). But next
year is definitely do-able.
-----Original Message-----
From: rodrdet [mailto:hepatitis-autoimmune-cpt3460@lists.careplace.com]
Sent: Wednesday, May 30, 2007 12:00 PM
To: Lynn Jarnecki
Subject: Re: [hepatitis-autoimmune] auto immune diseases
I found out after my dx, that I had osteopenia. Ever since starting pred
my dr. has me on fosomax, which has actually improved the osteopenia.
The only other auto immune I’ve had is Reynaud’s which actually has
gotten better.
-----Original Message-----
From: cornlily [mailto:hepatitis-autoimmune-cpt3460@lists.careplace.com]
Sent: Wednesday, May 30, 2007 12:32 PM
To: Lynn Jarnecki
Subject: Re: [hepatitis-autoimmune] auto immune diseases
Hi everyone,
I was diagnosed with AIH in 2003 but I’m sure I had it for a number years before.
I have no other autoimmune diseases but am suffering from dysphagia (trouble with food sticking in oesophagus) which I have been told is connected to my acid and bile reflux. I’ve just started different treatment for that and am keeping my fingers crossed.
I’m having a bit of a problem finding my way around the forum just now. I tend to give up too soon due to my fatigue, so, I’ll post here rather than look for the message I want to answer to and hope that it’s found by Anne
Annebeene
I hope someone has answered you by now. It’s very likely that you will live out your normal lifespan. Most people with AIH do very well. (although we might not feel it) Even if the liver is partly damaged ie. scarring, the liver can repair itself to a certain extent and we only need a small portion of the liver for it to work enough.
Don’t worry, you have a future.
Junebug,
You’re LFTs are high enough to warrant a better investigation. If you also have a blood test for Antinuclear antibodies (ANA) and or Anti-smooth muscle antibodies (ASMA) that would be more proof for AIH. The only sure way to test for AIH is by a liver biopsy. It can take some people a long time to be taken seriously as AIH is rare.
I would push for more tests but don’t worry, most people can be managed with steroids.
The only early LFT result I have, was taken 5 months into treatment. ALT was 15: normal = 12-14. This was considered a good response to the Prednisolone. I have flared while on treatment as high as 70 and had to take a higher dose of steroids to bring it back down.
I was tested for Sodium, Potassium, Urea, Creatinine, ALT, Bilirubin, Alkaline Phosphatase, Albumin, Calcium, Calcium(corrected), GGT and of course the antibodies.
I think doctors will always test for individual patients’ needs. (I’m in the UK)
I know that if you have one autoimmune disease, which Hashimoto’s Thyroiditis is, then it’s more likely that you can develop another.
Best wishes. Rosa
I was diagnosed with AIH in 1995 - my tests were in the 6000’s… really! -prednisone for a year - then Imuran - I’ve been on that since then.
In 1996 the GI I saw started testing my thryoid - said that it woudl probably be the next thing to be affected by autoimmune disease. And in 1998 - she was right! I was diagnosed with Hashimoto’s Thryoiditis (Autoimmune Thyroid Disease). Since then, I’ve had some increased joint pain and mostly fatigue. It really got bad in 2001 - that’s when I had to apply for disability. I was awarded in Jan 2003. I do ok now - I’m not hugely active, but I do have a life. It just requires naps!
Linda
Hi Nan,
So you’ve lived with AIH for quite a while!
As if one disease wasn’t enough, we have to get the extras. LOL.
I’m having trouble swallowing food at the moment. My consultant thinks it may be Gerd related as I have been proved to have bile in the stomach and an irritated esophagus and stomach. I’m trying some stronger meds for that. Let’s hope it works as I don’t want anymore tests.
I have been on various doses of prednisolone and am now taking 7.5mg and 75mg of Azathioprine (Imuran) and my ALT is going up and down only a little.
All in all I’m fairly happy but like you suffer from the constant tiredness and muscle aches.
Best wishes.
Yea, I’m an old hat at AIH. I have met a couple people that have had it longer than me though - took me quite by surprise. Although here is where I’ve seen the most people with it! There’s only a couple on my spoon boards.
My gi put me on prevacid years ago. We took a look at the amount of medications I was taking and suddenly realized that there could be some real problems with acid reflux down the road - so we decided to take a preventative measure - fortunately, I’ve never had any problems. In addition, Once I saw my GI that put me on the Imuran, she suggested I start taking an extra strenght tums every day for a calcium supplement - so between the prevacid and the antacid - I’m good. But I can’t take the antacid with the thyroid meds - they interact.
The gerd thing is a drag - too bad you got that - the pred didn’t help that any either. Hopefully you can get off the pred completely and just stick with the imuran. I understand I was really lucky - a lot of people have difficulty with imuran - not me!
Yea, that fatigue is a killer - you should see my meds list on my health history - When I saw my new gi last year, he walked in and said - “gee, i expected you to be a lot older!” I just tell the docs I’m High Maintenance, but worth it!
A positive attitude and a sense of humor help too.
linda
=====================
From: rosa hepatitis-autoimmune-cpt3460@lists.careplace.com
Date: 2007/06/08 Fri AM 10:45:00 CDT
To: lkaserman@verizon.net
Subject: Re: [hepatitis-autoimmune] auto immune diseases
I thought I was doing fine taking LANZOPRAZOLE  (PREVACID) but a gastroscopy and barium swallow proved otherwise so now I am trying OMEPRAZOLE and METOCLOPRAMIDE until I see the consultant Wednesday 13th June. The idea is that the irritation is causing my swallowing problem.
You talk about interactions with your meds; I was told not to take my CALCICHEW D3 tabs at the same time as the acid reflux tabs. ÂÂ
ÂÂI take the aza, pred and the metoclopramide in the morning. Another metroclopramide at 3 pm, omeprazole at 7 ish and metrocloprmide at bed time and I hate it. hate it, hate it. LOL
ÂÂHave you had a dexa scan? You may be alright with the tums for your bones but I’ve been on the pred for 3 and a half years and don’t show any signs of being able to come off it so I needed something stronger. I was taking ACTONEL but had to stop taking it as it may have been taking too long to pass through the oesophagus. When I get down to 5mg I flare up. I’m glad you’re off the pred if you have to take other meds as well.
ÂÂYou’re high maintenance; I’ve been a high sleeper for the past few weeks.  My bedroom looks like a kid’s play park. The bed is propped up at the top and I just hang on for dear life.  You’re right, humour does help. LOL
ÂÂ