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Re: Digest Number 3596

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Ray, I'm very sorry to learn things aren't going as well as you hoped. I have no knowledge in this area, but other members of the group may be able to address your problem. Best wishes.

Harper

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Cora and , each of us has a slightly different situation. Although the basic treatment for AIH is pretty standard, doctors vary widely in their beliefs on dosages. My GI treats a great deal of AIH. He says he has never had a patient able to go off Prednisone permanently, and getting AIH under control again is often difficult. He recommends that I continue Prednisone and Imuran for the rest of my life. In the four years since diagnosis, my Prednisone dosage has varied between 80.0 mg and 5.0 mg, with some ups and downs. Imuran stays consistent at 100 mg. He feels that the risk of side effects for Imuran is extremely low for most people. Pancreatitis, the most common side effect, generally shows up right away if at all. When I recently was hospitalized for five days with pancreatitis, he considered my dropping Imuran. However, he decided that, for me, the risks involved in discontinuing Imuran are too high.

Harper

In a message dated 5/22/2004 4:01:35 AM Pacific Daylight Time, writes:

I thought that I would be weaned off the prednisone and would be on imuran forever.... Maybe I misunderstood.

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Dear Cora,

My LFT levels went from 810 down to 150 over 6 months (observation only,

no treatment) and then as they were shooting up again to 330, I was

diagnosed with AIH and put on the medications. So from Feb, when it was

at 330, it took several months to drop to normal, so hang in there! Mine

are now at 17 and 12 and holding steady!

Bad News

Checked into the hospital yesterday because my doctors were unable to

determine the cause of my fevers for the last 2+ weeks. They hooked my

up to an IV for antibiotics, and ran a cat scan and a chest xray. The

xray was to check for TB, which I do not have. The cat scan checked my

liver and all nearby organs, abdomen, etc.

To make a long story short I have liver cancer. Foci (tumors) " too

numerous to count. "

So, no TX but (I hope) a transplant. I have read though, in my Hep C

book by Harriet Washington, that if you have more than 2 or 3 tumors

they will not do a transplant. Also, if you have had previous abdominal

surgery (which I have, colon removal) you also are not a suitable

candadate for a transplant.

I see my GI Dr at 9:15am tomorrow (yes, Saturday). Hopefully I will

learn more then.

If anyhow has knowledge that would address my suitability as a liver

transplant candidate, please share it with me.

Thanks,

Ray

[This message contained attachments]

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Dear Ray,

I am sorry to hear this news. I will be thinking of you. I hope you are

not in any pain. I hope you can get a transplant soon.

Message: 6

Date: Fri, 21 May 2004 21:23:57 -0700 (PDT)

From: Ray <raynoname@...>

Subject: Bad News

Checked into the hospital yesterday because my doctors were unable to

determine the cause of my fevers for the last 2+ weeks. They hooked my

up to an IV for antibiotics, and ran a cat scan and a chest xray. The

xray was to check for TB, which I do not have. The cat scan checked my

liver and all nearby organs, abdomen, etc.

To make a long story short I have liver cancer. Foci (tumors) " too

numerous to count. "

So, no TX but (I hope) a transplant. I have read though, in my Hep C

book by Harriet Washington, that if you have more than 2 or 3 tumors

they will not do a transplant. Also, if you have had previous abdominal

surgery (which I have, colon removal) you also are not a suitable

candadate for a transplant.

I see my GI Dr at 9:15am tomorrow (yes, Saturday). Hopefully I will

learn more then.

If anyhow has knowledge that would address my suitability as a liver

transplant candidate, please share it with me.

Thanks,

Ray

[This message contained attachments]

________________________________________________________________________

________________________________________________________________________

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