RE: Re: Auto Immune Hepatitis

[Guest guest]

Hi Richelle,Good luck to you again. I should add that I do have PSC & AIH, and the AIH is well controlled with Imuran & Prednisone - my LFTs are good. Unfortunately, I really suffer from fatigue.Good luck with the health care system. If you can be assertive, then do so. I bet you can find ways to work the system to your advantage. I have Kaiser (big health care system in parts of the US), and I push the system. I'm now seen every 4-8 weeks by my hepatologist to keep things in check. Marie

To: From: boolshit@...Date: Wed, 19 Nov 2008 07:42:56 +0000Subject: Re: Auto Immune Hepatitis

Thanks Marie and Chaim for your replies. I will keep you posted,

Marie, on what happens but don't expect a reply in a hurry. For two

reasons: 1) I still haven't decided what to do and 2) PSC, UC and

AIH are treated under the public health system in New Zealand which

is just as crappy as every other public health system in the world.

I do have medical insurance but it means nothing for these diseases

and many others. So, if I do decide to have a liver biopsy and

colonoscopy I will be waiting for a while anyway. You are not

treated as a person, you are just a number. That is my experience

anyway.

Cheers

Richelle

Christchurch, New Zealand

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> Hi Richelle,

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> AIH is a serious liver illness that leads to liver failure if

untreated. You need a liver biopsy to diagnose it. Talk to your

doctor to let him/her know your concerns about pain involved with

the biopsy. There are immunosuppressant drugs that may be able to

control the disease so that a liver transplant won't be necessary,

or at least not now. As you no doubt know, the other option to a

liver transplant is death. So the drugs don't seem so bad when you

look at the alternative. Liver failure can happen pretty quickly,

so this is not something I would postpone.

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> But I wouldn't postpone the colonoscopies either. I almost got

colon cancer, so the colonoscopies saved my life, along with the

colectomy. I also would treat the UC with medication, as

complications of UC can be fatal.

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> The immunosuppresant drugs will treat the AIH, but not the PSC.

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> It may be better to take the attitude that you will plan for the

worst (i.e. colon cancer or liver cancer or liver failure), but hope

for the best (no cancer or liver failure). I know someone who very

recently only hoped for the best, and wasn't preparing for the

worst, and almost didn't get a liver when he needed it. His

recovery from the transplant is now pretty brutal, since he was so

sick and near death at the time of transplant. All the worrying and

planning regarding UC, PSC & AIH is difficult, but hopefully it will

pay off, and if I need it, I'll get a liver transplant, and I'll do

well afterwards.

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> Wishing you the best of luck. Please write to let us know how

this goes for you.

>

> Marie

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> To:

> From: boolshit@...

> Date: Tue, 18 Nov 2008 05:51:41 +0000

> Subject: Auto Immune Hepatitis

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> Hi

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> I went and saw my gastro doc a couple of weeks ago and had blood

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> tests while I was there. Some of them were ok, others weren't but

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> apparently I've got an elevated anti nuclear antibody (whatever

that

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> means). The following are her words:

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> "I think that you should have a liver biopsy. You may have an

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> overlap syndrome with a component of auto immune hepatitis (google

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> that). This means that the liver damage may be able to be slowed

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> possibly stopped with the use of medications."

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> Does anyone have any experience of this. I have small duct psc and

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> uc but I'm not taking any medication which is my choice. They

would

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> like to have me on drugs. I'm not keen on the liver biopsy because

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> I've had them before (approx 10 years ago) and I've never

forgotten

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> how painful they are. I'm also supposed to be having yearly

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> colonoscopies (yippee) but I've decided to forgo them for the

moment

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> as well. If someone could explain what AIH is, in nice simple

terms,

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> and is it something else I need to worry about, I would be most

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> greatful. Thanks.

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> Richelle

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> Christchurch, New Zealand

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