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Imuran results needed?

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Old 04-24-2009, 12:02 PM   #1
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gcbpgh HB User
Imuran results needed?

Hi All
I have primary sjogrens with autoimmune hepatitis. My liver doctor and immunologist conferred and want to put me on Imuran. Cancer runs heavily on my fathers side. I have read all the side effects. I would like to hear from anyone who has taken imuran and how it helped or not helped. Also, possible side effects. I am not good with medicine. Plaquenil made me ill as so many other medicines. But I have cirrhosis now and they want to try to stop it and I don't know what to do. Thanks to all

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Old 04-24-2009, 08:04 PM   #2
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Akula64 HB User
Re: Imuran results needed?

I have sjogrens and ITP...was on plaquenil, but it did nothing for my doctors told me they wanted to me on is the ONLY thing that has worked...I was concerned just as you were when I read the side effects...cancer runs on both sides of my family, and I just lost my mom to breast cancer in Oct. ...but thouhgt...I have to try something....and I am so glad I took the leap with it...I started out at 75 mg a day, and now 1 1/2 yrs later, I have had NO..repeat...NO problems with my platelets, and no flare-ups with the sjogrens...I have the dry mouth and dry eyes, but that is it...I am now doing so well....they have me on 25 mg a day....the only problem I had with Imuran in the beginning, was loose stools....but your body will adjust to it, and it gets better....and a stomach ache if I took it without food....I have regular blood tests, and so good!! Best I have felt since being diagnosed in Aug of 2005....I feel the Imuran has given me back my life...I am able to do ALL the things I did before being I would suggest that you go ahead and give it a never might do as well on you!!! Good luck!!!

Old 04-24-2009, 09:35 PM   #3
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Re: Imuran results needed?

GCP, how did the drs find you had autoimmune hepatitis? Was it a regular A, B, C hepatitis test? I ask because I have elevated liver alt and ast and I don't drink. I saw another rheumotologist the other day because of my sjogrens symptoms and she said she is referring me back to the G.I. doctor because she said I might have a liver autoimmune disease. I had negative hep tests. I am being bounced around like a tennis ball.

Old 04-25-2009, 05:44 PM   #4
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Re: Imuran results needed?

First, I want to thank you for the helpful information, I really needed to hear it from someone who has been there facing this decision. So happy it helped you. I wish you continued good health.

Second answer, I hear you. I too have been bounced for over a year now.
My first liver doctor I felt was not effective or competent. So I searched for a better one. I found him. Always make sure your doctor has had a fellowship was advice I got from this board. I now do.

It has taken a few appointments, much blood work (not sure what all they do) but my new liver doctor felt my liver problem was more autoimmune . The first one felt it was NASH and I should diet. He also found my ammonia levels were at 147 and put me on Xifaxxan. Next appointment without a blood test he told me I could go off of it. I knew he was clueless. I was still sleeping about 18 hours a day. But he felt I looked good. Unbelievable.

Recently, I went to my 3rd Immunologist who did his own test, didn't agree at first with the second liver specialist but had a conference call with my liver doctor and they now agree that my cirrhosis is from autoimmune hepatitis and linked to sjogrens. The treatment now would be imuran.

Last year when they found I had sjogrens my first immunologist noticed that my liver enzyme's were high, he sent me to the first liver doctor who did a liver biopsy and came back with full cirrhosis. I was shocked because I don't drink or have any type of life style that you associate with cirrhosis. I know they tested me for every hepatitis as far as the A, B, C etc. I had none.
Autoimmune is tested with different tests, I think. If you google autoimmune hepatitis a few good articles come up first.

Now for over 10 years I went every six months to an endocrinologist for blood work for hormone therapy because of an early hysterectomy.

My liver enzymes were up from what the first immunologist told me from all the past blood work they could get from her but the doctor never said a word to me. This could have been found sooner.

It took my getting very ill and not being able to get out of bed and demanding my doctor to find what was wrong with me before anyone found anything.

By demanding I mean bursting into tears in his office when he said they could find nothing and was just going to send me home. Then they did the extra blood work for sjogrens. I had never heard of it. I wasn't prepared for the next year, all the tests, the doctors and still feeling bad and wanting my life back. Until, I searched and found the second liver doctor. Then fighting for the right sjogrens doctor. Its overwhelming, frustrating and demoralizing.

But you must fight for yourself. Go on line and read. Write it down when it seems to be important. Search your local hospitals, search the doctors, look up their education and then find out how long they have been practicing. Change doctors if you feel they aren't doing right by you. Hope this is a little helpful.


Old 06-10-2009, 06:42 PM   #5
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saiello HB User
Re: Imuran results needed?

I was diagnosed with autoimmune hep in 1997 and have been on Imuran ever since. I have had several biopsies and it seems it hasn't gotten any worse. I feel as though it has worked for my liver. The only side effect I seem to have is that I get soar throats often but they do go away quickly. However, this last year I have had some "other" illness....still don't know what it is...working with a rheum and neuro doc to figure it out. .could be another autoimmune disease flaring up.

Old 07-05-2009, 06:59 AM   #6
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Re: Imuran results needed?

Hi, thanks for responding. Sorry to hear you are not feeling well and it might be something new. Hopefully, they can help you quickly.

I started the imuran one month ago. 50 mg twice a day to increase at 2 weeks to 3 times a day after blood work. At first I was just nauseous which I could handle. About a week after I started taking the 3rd pill I starting vomiting by evening and got a horrible headache. I must be slow because I kept thinking the headache was from something else.

Finally on Friday evening, I called my doctor.
I got the resident on call, he suggested I might be toxic and I should go to any hospital emergency room for blood work to see. Having my share of emergency rooms I knew they take you by priority and on a holiday weekend I would still be there today.

I called the pharmacist who suggested going back to 2 pills until I could contact my doctor Monday. Headache went away, vomiting stopped and I feel better. But last evening I noticed a rather large lump on my inner right thigh. Have you ever had this side effect. Anyone out there? I am a little scared. Thanks to all.

Gcb in pgh

Old 04-05-2010, 11:41 PM   #7
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athena22 HB User
Re: Imuran results needed?

Imuran infusinon my mother has taken for about 2 years, now she is legaly blind, she also has autoimmune hipatitas, I am her daughter and I truly believe that the infusinons of Imuran have made her legaly blind. When she took the pills of imuran she was just fine. Pills as they call azthrophine generic name for Imuran. The imuran infusions I think is what made her legaly blind.

Old 04-06-2010, 07:46 AM   #8
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gcbpgh HB User
Re: Imuran results needed?

I am so sorry about your Mother. Thank you for taking the time to answer me. I quit taking the imuran. They put me on Cellcept and I am having trouble with it also. It seems the side effects of the cure just add to the horror of the disease. My prayers go out for your Mom and you. Thanks,

Gcb in Pgh

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autoimmune hepatitis, cirrhosis, imuran, sjögren's syndrome

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