Re: From Missy - AIH/PBC

February 22, 2011

Missy, welcome to the group. Have you just recently joined the PBC group?

I don't know a lot about AIH/PBC overlap, but you'll find several in both groups

who do. I just don't have a background in combined AIH/PBC, although I read the

PBC group posts each day.

Most people with AIH alone begin treatment with Prednisone. Imuran

(azathioprine, generic) is very soon added. Imuran allows the dosage of

Prednisone to be lowered. Nowadays, many people have a test called TPMT before

beginning Imuran therapy. I think it highly advisable to have this test.

I've taken Imuran/azathioprine for more than 10 years, at 100mg daily, with no

side effects. I probably will continue it for the rest of my life. I began

treatment with 80mg prednisone daily; now I'm down to 5mg.

How were you diagnosed? Are you seeing a hepatologist? Do you feel comfortable

talking with him or her? Are you in the U.S.?

All this must have come as a great surprise to you. The good news is that today

there is good treatment for liver disease. You've been diagnosed, and you've

started treatment. You're on your way to getting better.

If you have a friend or family member who can go with you to the first few

appointments, at least, take advantage of that. Another set of ears can help a

lot.

Remember that you have rights to every lab test, scan, etc. that's done. Make

sure you get a copy, electronic or otherwise, and keep it in a file.

I strongly advise that before each appt you make a document listing all your

questions, with spaces between to jot in responses. Make a copy for the doctor

and one for anyone accompanying you. Keep those documents, noted with date and

doctor's name, in your files. My doctors really like to have the printed

questions at the start of the visit; afterward, they keep them in their own

files.

During this time, look for help where ever you can get it. Take naps when you

can. Be good to yourself.

You probably understand that AIH is an autoimmune disorder (AD), and that ADs in

general are familial.

Many of us have Dr. Palmer's " Guide to Liver Disease " and find it

helpful. If you can't get it locally, it's available from Amazon at under $20.

It's a main-stream, widely accepted guide for people who are new to liver

disease of all kinds.

Best wishes to you and to all your family.

(Ms) Harper

AIH dx 2000

Celiac Disease dx 2001

[ ] Hi

Heya,

I just joined this group. I have been in the pbc group though.

I was diagnoised this month with aih/pbc stage 2 and fiborsis.

I am 35, married, mother of a 5 year old son with autism (but he is doing well

and getting lots of thearpy)

I am on urso right now. They might add imuran in 3 months, depending on my liver

test result.

Here mostly for support and suggestions.

Also curious about other people's experience with being on imuran.

Also positive anas, amas, anti-smooth, rnp and I had a biospy recently which

showed the damage.

Thanks,

Missy

February 22, 2011

Heya,

thanks for responding. I did recently join that group and then I saw this one on

their page.

my doc said he is starting me on urso first cause its the least toxic of

possible drugs. But I think imuran is likely to be added.

Thanks for mentioning that test, I will ask for it if my doc doesn't do it on

his own.

its really encouraging to hear that you have done well with imuran.

also congrats on geting the predisone down so low.

I went in for a physical for my clinicals for my LPN program.

My doctor noticed my legs were all scartched up (I get really really itchy) and

wanted to run some tests.

She then founds elevated liver enzymes, amas, anas, anti-smooth, rnp and smith

antibodies and reffered me to a GI doctor. The GI doc thought I was fine, but I

kept thinking back to my primary doctor telling me that she was pretty sure I

had either aih or pbc, so I insisted on a biospy and they found stage too

fiborsis.

I live in the US, in CO.

I don't have a liver doc, I have Kaiser insurance and they seem to be keeping me

with the GI doctor, who now after the biospy and being wrong - is nwo taking

this very seriously. So I don't think he is all bad.

Then I should get a copy of the biospy, but I am afarid to even look at it!

My sister has lupus, so maybe that is part of the family connection. My aunts

have auto-immune problems.

Also I might have celiacs too, based on my test.

I will have to order her book!

thanks again for replying, it did help me feel less alone with this.

Missy : )

Â

________________________________

From: Harper <flatcat9@...>

Sent: Mon, February 21, 2011 5:30:22 PM

Subject: Re: [ ] From Missy - AIH/PBC

Â

Missy, welcome to the group. Have you just recently joined the PBC group?

I don't know a lot about AIH/PBC overlap, but you'll find several in both groups

who do. I just don't have a background in combined AIH/PBC, although I read the

PBC group posts each day.

Most people with AIH alone begin treatment with Prednisone. Imuran

(azathioprine, generic) is very soon added. Imuran allows the dosage of

Prednisone to be lowered. Nowadays, many people have a test called TPMT before

beginning Imuran therapy. I think it highly advisable to have this test.

I've taken Imuran/azathioprine for more than 10 years, at 100mg daily, with no

side effects. I probably will continue it for the rest of my life. I began

treatment with 80mg prednisone daily; now I'm down to 5mg.

How were you diagnosed? Are you seeing a hepatologist? Do you feel comfortable

talking with him or her? Are you in the U.S.?

All this must have come as a great surprise to you. The good news is that today

there is good treatment for liver disease. You've been diagnosed, and you've

started treatment. You're on your way to getting better.

If you have a friend or family member who can go with you to the first few

appointments, at least, take advantage of that. Another set of ears can help a

lot.

Remember that you have rights to every lab test, scan, etc. that's done. Make

sure you get a copy, electronic or otherwise, and keep it in a file.

I strongly advise that before each appt you make a document listing all your

questions, with spaces between to jot in responses. Make a copy for the doctor

and one for anyone accompanying you. Keep those documents, noted with date and

doctor's name, in your files. My doctors really like to have the printed

questions at the start of the visit; afterward, they keep them in their own

files.

During this time, look for help where ever you can get it. Take naps when you

can. Be good to yourself.

You probably understand that AIH is an autoimmune disorder (AD), and that ADs in

general are familial.

Many of us have Dr. Palmer's " Guide to Liver Disease " and find it

helpful. If you can't get it locally, it's available from Amazon at under $20.

It's a main-stream, widely accepted guide for people who are new to liver

disease of all kinds.

Best wishes to you and to all your family.

(Ms) Harper

AIH dx 2000

Celiac Disease dx 2001

[ ] Hi

Heya,

I just joined this group. I have been in the pbc group though.

I was diagnoised this month with aih/pbc stage 2 and fiborsis.

I am 35, married, mother of a 5 year old son with autism (but he is doing well

and getting lots of thearpy)

I am on urso right now. They might add imuran in 3 months, depending on my liver

test result.

Here mostly for support and suggestions.

Also curious about other people's experience with being on imuran.

Also positive anas, amas, anti-smooth, rnp and I had a biospy recently which

showed the damage.

Thanks,

Missy

February 22, 2011

Also I might have celiacs too, based on my test.

Missy, I have only a moment to write, but I want to make sure you have some

important information about celiac disease, which is by far the most common of

all autoimmune diseases. You say " Also I might have celiacs too, based on my

test. " Do you have a positive diagnosis of CD? False positives for CD are

relatively rare, compared to false negatives. If you plan on further blood test

or biopsy for CD, it's important to continue eating a significant amount of

gluten up until testing. Otherwise, you're more likely to get a false negative.

Keep in mind that CD is highly familial, so close relatives may want to look

into testing. I've heard that there seems to be a particular link with autism,

but I don't know enough about that to speak authoritatively.

About half the people with CD have no symptoms at the time of diagnosis.

Sites such as celiac.com and celiac.org are good starting points for learning

about celiac disease.

Best wishes.

Harper

[ ] Hi

Heya,

I just joined this group. I have been in the pbc group though.

I was diagnoised this month with aih/pbc stage 2 and fiborsis.

I am 35, married, mother of a 5 year old son with autism (but he is doing well

and getting lots of thearpy)

I am on urso right now. They might add imuran in 3 months, depending on my liver

test result.

Here mostly for support and suggestions.

Also curious about other people's experience with being on imuran.

Also positive anas, amas, anti-smooth, rnp and I had a biospy recently which

showed the damage.

Thanks,

Missy

February 22, 2011

Hi Missy. I also have the Kaiser health plan, and my story is similar to

yours. After years of slowly increasing liver enzymes (ALT, AST, ALP) my

primary care doctor finally referred me to a GI specialist (gastro) who

ordered the AMA blood test as well as a liver ultrasound and liver biopsy.

The rest is history. I did have to beg the gastro to increase my Urso

dosage somewhat. He had me on only 12.5 mg/kg, and I'm now on 14 mg/kg.

The important thing is to stay informed, read all the medical literature,

and politely but firmly ask the Kaiser doctors for what you want.

I did ask for a copy of the liver biopsy report. It is so technical that it

is difficult to comprehend what it is saying.

in Napa California, age 69, PBC stage 4 dx 9/2010; also IBS,

hypertension, Sjogrenâ€™s

--------------------------------------------------------------------------------\

----------------------------

-----Original Message-----

From: Missy Kay

I don't have a liver doc, I have Kaiser insurance and they seem to be

keeping me

with the GI doctor, who now after the biospy and being wrong - is nwo taking

this very seriously. So I don't think he is all bad.

Then I should get a copy of the biospy, but I am afarid to even look at it!

February 22, 2011

I, too, was diagnosed at Kaiser (not PBC, but only AIH) by a GI. For me, the

biopsy, diagnosis, and treatment were extremely swift, all taking place within

days of a routine physical. I have no real complaints about my treatment at

Kaiser. I never felt that they skimped on my care.

My insurance changed and I had to leave Kaiser. Now I'm at a teaching hospital,

seeing a notable hepatologist. She has been far more aggressive in seeking the

perfect dosage to give me the best life possible. I don't know whether it's made

a difference, but I do feel more certainty that all possibilities are examined.

(My adult daughter's healthcare is through Kaiser. She has complicated, painful

problems. Her treatment at Kaiser was extremely poor until she tracked down a

doctor who understood her disorder and took an interest in it. As long as he's

at Kaiser, she feels she's in good hands -- although she's looking for a

specialist outside Kaiser. Kaiser must provide a specialist if they can't deal

with a particular problem. I don't know the wording of the insurance coverage,

but it might be worth your looking into if you feel your care is inadequate. I

know I'm not being very clear -- I'm a bit short on time and scrambling.)

Harper

AIH dx 2000

Re: [ ] From Missy - AIH/PBC