so how long did that take? I saw my hep yesterday and said that I have done well
awhile and on next visit if LFTs are still normal he is going to drop my Imuran
in half and if that goes ok will try and drop all. He said 60% of people will
relapse. So I said why even change medication dosage and he said it is just so
bad to stay on Imuran that it is best to try and get off if possible?
Autoimmune Hepatitis - I was wondering if anyone has gone off their meds? Did you flare back up and?
- 7 Oct 2012 by person011
- 22 June 2015
- imuran, autoimmune disorders, autoimmune hepatitis
Added 7 Oct 2012:
Right now I am on 100mg Imuran
Hello person011 and welcome to DC. You have an interesting dilemma here. It is true that some of the medications that are prescribed also have serious side effects and that they aren't meant to be on long-term. I was on methotrexate and remacade infusions for instance for about 7 years. Then I was told it wasn't a good idea to stay on them and another doctor stopped the remacade and I dropped into a slump of fatigue and feeling unwell. Well, I guess I have gotten used to it and it doesn't really bother me any more. But getting yourself educated and reading up on it will also help you. Naomi Judd, the country singer, has written a book about how she is coping with it. It could be a good read for you, too.
You might do quite well without it... you may NOT relapse. But wouldn't it be worth the shot to get off the drugs to see how you do? Or, you can always find another doctor to get a second opinion. Or, even a third opinion if you don't like the advice you are getting.
Be well and take good care of you...
Hello, I was diagnosed last year with autoimmune hep. Been on prednisone and azathiprine. It started with a high dose of prednisone 60mg. Once my ALT and AST were down to norm (under 30) Dr. lowered my dose weekly and went down to 5mg. Did well for months on 5mgs and I had a flareup this summer (Aug). My Dr. put me back on 40mg of prednisone and also added a new medicine azathioprine (imuran). I hate this new drug, worst then prednisone.
Yes I was told about the flareups and I got one. Dr has no idea what causes flareups. I tried to figure out what I was doing that may had caused the flareup, nothing different. it sucks that having this illness one can have a flareup anytime. I wish Dr. would have never put me on imuran. I have so many terrible side effects and am miserable, the worst is headaches.
Hi! How long have you been diagnosed and on meds? I was diagnosed with AIH Feb2012. Started out on 60mgs prednisone daily. Tapered all summer. Tried Imuran in May. Could not tolerate. It made me very sick (severe vomiting/diarrhea) As of sep daily meds are 5mg prednisone & 6mp (mercaptopurine) 50 mgs daily. LFT's have been consistently good. Naomi Judd has HepC not AIH although it is a good read about being positive. I am afraid of a flareup because that means high steroid dose again. Side effects physically & emotionally while on prednisone were bad for me so I am very concerned to lower or go off meds to risk a flareup. My dr has said I will be on this treatment indefinitely. He feels that I havent had this diagnosis long enough to know if I am in remission yet. I feel stronger everyday and hope to go back to work soon!! suggestion to you: Gather as much info as you can about AIH.
Make a notebook about you and your illness! This is a great site for collecting & sharing info! Also highly recommend The Inspire Website too. Best wishes to you in your learning process! MaryB ps ask your dr lots of questions!!!
I just went off my medication a year ago, and haven't had a flare up. My disease also hit, though, almost 14 years ago! I couldn't tolerate Imuran or the others, so my doctor put my on Ursodiol. You may want to ask your doctor about that one. It kept the inflammation down, and had no side effects that I could notice at least. My doctor had said he was just going to have me stay on it for the rest of my life since it didn't have any side effects, and was doing the trick. Why rock the boat type of thing. When my doctor died, I was so upset, I stopped taking the meds, and stopped going for my yearly exams. I finally decided this wasn't smart of me, and I am meeting with a new Hepatologist next month. I will see if she puts me back on Ursodiol. I do have a question... Anyone, who has been in a remission of sorts, did you have to go back for another liver biopsy?
- Imuran Information for Consumers
- Imuran Information for Healthcare Professionals (includes dosage details)
- Side Effects of Imuran (detailed)
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