Hi there

[Guest guest]

Mark,

Looks like you are doing remarkably well. You were able to reduce your doses

much faster than I was. I was diagnosed almost four years ago now, and I am

only down to 3 mg of prednisone and 50 mg of Imuran. My doctor is confident

about taking me off the prednisone. I am praying that it will be

permanently, but keep in mind a great number of people have to be on a small

maintenance dose of it. I will look at my old labs to see about my GGPT.

Best of luck to you!

Tami (AIH)

chollyfam@...

[Guest guest]

Hi Mark:

Welcome to the group. Sue B is from Aussieland...

AIH/CA

[Guest guest]

Mark,

I am from Australia also, Northern New South Wales, Kingscliff. Good to

know there is another Aussie out there.

This group, you will find, I absolutely fabulous. They have been able to

get me through things that I thought I would never surpass. Times when I

was at my worst they have helped no end.

You will never regret the day you joined them. Just to be able to read the

postings makes you feel less alone in this fight against this horrid

disease.

I have posted when I have been really down and the encouragement that comes

forth is what gets me through. I hope you find it the same.

Can't answer your question about feeling no pain when your numbers are

normal, I haven't had normal numbers (yet). But I do suffer from constant

pain.

Keep well.

SueB.

----------

From: Mark Gray <mcgray@...>

onelist

Subject: [ ] Hi there

Date: Wednesday, 26 May 1999 21:01

Hi I am new to the group. My name is Mark I am 37 and live in Adelaide

Australia. I have been reading with interest the posts form the group. I

was diagnised with AIH 18 months ago on my 36th birthday. (Great present).

I had persistent elevated labs for about 18 months prior. They waited then

did a biopsy and found the problem. Only slightly abnormal labs alt and

asp. Doctor didn't seem to concerned (unlike me). Went straight on

prednisolone and imuran.

Starting dose 20mg Pred and 100mg imuran. They are currently dropping the

doses and I am still stable on 2.5mg pred and 50mg imuran. Labs all normal

except GGPT level is about 150 all the time. The specialist is a bit

puzzled by this?

In reading the posts it appears that getting off pred is a possibility with

maintenance doses of imuran. Is that the general consesus? I will talk to

my doctor about this.

Personally, I would like to get off the steroids even 2.5mg is too much

don't you think? I really can't complain though I have had no real side

effects apart from a bit of insomnia early on and a bit of a chubby face.

(eeekkk)

Other than that I am asymtomatic which I am extremely grateful. Bit of

lower right quadrant pain occassioanlly. If my labs are normal should I be

feeling pain?

Great to read all the emails look forward to the support of everyone and

getting to know you all.

Any Aussies in the crowd?

Mark

[Guest guest]

[ ] Hi there

Hi I am new to the group. My name is Mark I am 37 and live in Adelaide

Australia. I have been reading with interest the posts form the group. I was

diagnised with AIH 18 months ago on my 36th birthday. (Great present). I had

persistent elevated labs for about 18 months prior. They waited then did a

biopsy and found the problem. Only slightly abnormal labs alt and asp. Doctor

didn't seem to concerned (unlike me). Went straight on prednisolone and imuran.

Starting dose 20mg Pred and 100mg imuran. They are currently dropping the

doses and I am still stable on 2.5mg pred and 50mg imuran. Labs all normal

except GGPT level is about 150 all the time. The specialist is a bit puzzled by

this?

In reading the posts it appears that getting off pred is a possibility with

maintenance doses of imuran. Is that the general consesus? I will talk to my

doctor about this.

Personally, I would like to get off the steroids even 2.5mg is too much

don't you think? I really can't complain though I have had no real side effects

apart from a bit of insomnia early on and a bit of a chubby face. (eeekkk)

Other than that I am asymtomatic which I am extremely grateful. Bit of lower

right quadrant pain occassioanlly. If my labs are normal should I be feeling

pain?

Great to read all the emails look forward to the support of everyone and

getting to know you all.

Any Aussies in the crowd?

Mark

Dear Mark,

Yes, it is possible to get entirely off Pregn. I am off totally now since

last August. I am on 6MP or Purinethol as it is commercially called. I am doing

very well, except after 1-1/2 yrs. on Predg. I don't think I will ever lose all

the weight I gained-it turned to fat. This is the least of my worries.

Best of luck.

Elaine from the east coast of U.S.A.

[Guest guest]

[ ] Hi there

Hi I am new to the group. My name is Mark I am 37 and live in Adelaide

Australia. I have been reading with interest the posts form the group. I was

diagnised with AIH 18 months ago on my 36th birthday. (Great present). I had

persistent elevated labs for about 18 months prior. They waited then did a

biopsy and found the problem. Only slightly abnormal labs alt and asp. Doctor

didn't seem to concerned (unlike me). Went straight on prednisolone and imuran.

Starting dose 20mg Pred and 100mg imuran. They are currently dropping

the doses and I am still stable on 2.5mg pred and 50mg imuran. Labs all normal

except GGPT level is about 150 all the time. The specialist is a bit puzzled by

this?

In reading the posts it appears that getting off pred is a possibility

with maintenance doses of imuran. Is that the general consesus? I will talk to

my doctor about this.

Personally, I would like to get off the steroids even 2.5mg is too much

don't you think? I really can't complain though I have had no real side effects

apart from a bit of insomnia early on and a bit of a chubby face. (eeekkk)

Other than that I am asymtomatic which I am extremely grateful. Bit of

lower right quadrant pain occassioanlly. If my labs are normal should I be

feeling pain?

Great to read all the emails look forward to the support of everyone and

getting to know you all.

Any Aussies in the crowd?

Mark

Dear Mark,

Yes, it is possible to get entirely off Pregn. I am off totally now

since last August. I am on 6MP or Purinethol as it is commercially called. I am

doing very well, except after 1-1/2 yrs. on Predg. I don't think I will ever

lose all the weight I gained-it turned to fat. This is the least of my worries.

Best of luck.

Elaine from the east coast of U.S.A.

[Guest guest]

Hi Mark,

It's helpful to have more male perspective on AIH. I wonder if the percentage

of males might become higher now that diagnostic methods are improving?

Your doctor took awhile to react but it sounds like he did the right thing when

he'd identified the disease. My GGTP is also always elevated, even when just

about everything else is elevated. My Hepatologist told me that's to be

expected with liver disease but he didn't explain why. (I'm only another dumb

patient and probably wouldn't understand.)

Everyone's different, but I think that the objective is usually to wean a

patient off Prednisone once the inflammation is under control and labs begin to

normalize. However, I've been told that the odds are good that after

withdrawal from pred, it will be necessary to start taking it again at some

time in the future. Supposedly that can happen within weeks or months.

Naturally, most of us hope we'll be the exception and never have to take it

again. I've also been told that after decreasing to 7.5 mgs. and under the

side effects are minimal and some of the more unpleasant effects begin to

disappear. I wouldn't mind taking a maintenance dose if it would improve the

general quality of life so I'm ready to settle for 5 mgs. if I can safely make

it there. I'm now down to 6 mgs. a week.

Some people lose the chipmunk look quickly. I did. Others say that it never

has gone away, even though prednisone has been decreased. It's kind of a shock

to look in the mirror and see a face you don't quite recognize.

Some people never have (right sided) liver pain. I didn't despite advanced

cirrhosis. Others are battling ongoing pain and eventually their doctors are

able to identify the cause, which could be from any number of side effects. If

it increases, I'd certainly ask your doctor for an explanation.

Sounds like you're doing well. I hope that it stays that way!

Take care,

Geri

[Guest guest]

plesase disregard my previous post... this address is right next to my best

friends, and i must keep clicking on this one by mistake...sorry... Chris

[Guest guest]

I am also the spouse of someone with hep c...my

dh was diagnosed last dec. What a shock that was for

us! And, how far we have come since then. We have 3

children, 2 grown and one a senior in hs. I and all of them

were tested also. We were all negative.<br>We have no

idea how long ago, where, when or how my dh contracted

this disease. We speculate a lot but....we'll never

know. <br>BTW, my older sis also has hep c and has

known about hers for several years. She knows she got

hers through a blood transfusion many years ago. She

is the pres of her local chapter of the American

Liver Foundation. She was a godsend to us while we were

first dealing with dh's diagnosis and still is. <br>So,

I have 2 loved ones with this hatefull disease. As

they say, this is a disease of our

generation.....<br><br>Jill

[Guest guest]

Dear Sari and Hello to all our fellow friends

I agree that our friends in the USA seem to be more fortunate than we are. Here

in South Africa I also have a problem in obtaining many of the products.

Even our Rye bread contains 40% wheat. I therefore rather stick to Ryvita

Cripsbreads - will be happy if someone out there can help us with a recipe to

bake our own bread.

I also started on the Olive Leaf tablets two days ago - finding my ME symptoms a

bit worse - sure that my body is going through a bit of a detox - but will hang

in there.

In my book I see that Goat's cheese is neutral but that we must avoid Goat's

milk - sorry can't help with the Goat's yogurt.

Best wishes to all

Elize

Johannesburg

South Africa

>>> SariT@... 04/06/00 09:35AM >>>

[Guest guest]

Dr D has a question and answer section. It is closed down at present. I'm

not sure when he plans to open it again, perhaps someone else might answer

that for you. Solgar is very reliable.

Regards

.

hi there

Shalom,

Good morning to you all. as I go along reading your posting I think that you

are lucky over there at the u.s, you have so much variety. well since all

this trend off " getting back to nature " started over there it makes seance.

here in Israel we have only Rey bread or sprouted wheat bread that is too

moist for me. if I remember right Rey is N. I've tried some Rey pasta but it

was a flop. but I must admit little by little thing improve as the demand

grows.

Dr. D wrote no yogurt but what about gout milk yogurt? we all have so many

questions about products ect. that are not in the book. is there a way to

contact Dr. D and ask him?

I've started taking olive leaf extract, I'll tell you if it does any good.

Does any one know of the brand SOLGAR for vitamins ect. are they reliable?

Thank for all the help I get from you.

Sari, Israel

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

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[Guest guest]

I have seen olive leaf mentioned quite often. What are its healing

properties ? is it special ??

Regards

.

Re: hi there

Dear Sari and Hello to all our fellow friends

I agree that our friends in the USA seem to be more fortunate than we are.

Here in South Africa I also have a problem in obtaining many of the

products.

Even our Rye bread contains 40% wheat. I therefore rather stick to Ryvita

Cripsbreads - will be happy if someone out there can help us with a recipe

to bake our own bread.

I also started on the Olive Leaf tablets two days ago - finding my ME

symptoms a bit worse - sure that my body is going through a bit of a detox -

but will hang in there.

In my book I see that Goat's cheese is neutral but that we must avoid Goat's

milk - sorry can't help with the Goat's yogurt.

Best wishes to all

Elize

Johannesburg

South Africa

>>> SariT@... 04/06/00 09:35AM >>>

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[Guest guest]

Not really sure about olive leaf other than it kills parasites, but one thing for sure......I permed my hair and did not use a perm for color treated hair (oops!) therefore my hair was sticky and like brittle straw when I took the rods out. I was in a panick and so mad at myself for not reading labels. What I did do was put heated olive oil in my hair and let it sit there all night. (I put a plastic bag around my head and a towel on my pillow so I didn't leave a mess). The next morning.....whoala. Perfect. I know olive oil is excellent for our skin, and it is good (warmed) for loosening ear wax (sweet oil) So olives have a great benefit in many ways aye?

Debbie

My iCQ # is 4310873

RE: hi there

I have seen olive leaf mentioned quite often. What are its healingproperties ? is it special ??Regards.-----Original Message-----From: Elize Combrink [mailto:Elize.Combrink@...]Sent: Thursday, 6 April 2000 20:11egroupsSubject: Re: hi thereDear Sari and Hello to all our fellow friendsI agree that our friends in the USA seem to be more fortunate than we are.Here in South Africa I also have a problem in obtaining many of theproducts.Even our Rye bread contains 40% wheat. I therefore rather stick to RyvitaCripsbreads - will be happy if someone out there can help us with a recipeto bake our own bread.I also started on the Olive Leaf tablets two days ago - finding my MEsymptoms a bit worse - sure that my body is going through a bit of a detox -but will hang in there.In my book I see that Goat's cheese is neutral but that we must avoid Goat'smilk - sorry can't help with the Goat's yogurt.Best wishes to allElizeJohannesburgSouth Africa>>> SariT@... 04/06/00 09:35AM >>>------------------------------------------------------------------------LOW RATE, NO WAIT!Get a NextCard Visa, in 30 seconds! Get ratesas low as 2.9% Intro or 9.9% Fixed APR and no hidden fees.Apply NOW!1/2122/5/_/473523/_/955008690/------------------------------------------------------------------------

[Guest guest]

Hello Sari,

I have never tried goat milk yogurt. I know goat milk is neutral for Type

0's. I will occasionally eat goat cheese. I stopped consuming dairy

regularly over 25 years ago. However, I can vouch for Solgar supplements. I

take the Calcium, Vitamin D and Boron supplement daily.

Kathleen

[Guest guest]

Hi Kathleen,

According to my book and info I found at dadamo.com, goat milk is an avoid

for type Os. Goat cheese is an occasional food--a few times a month. Has

anyone else read that goat milk is neutral for type Os?? Thanks, Louise.

>

>Hello Sari,

>

>I have never tried goat milk yogurt. I know goat milk is neutral for Type

>0's. I will occasionally eat goat cheese. I stopped consuming dairy

>regularly over 25 years ago. However, I can vouch for Solgar supplements.

>I

>take the Calcium, Vitamin D and Boron supplement daily.

>

>Kathleen

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

[Guest guest]

Sari,

My mistake.

My apologies,

Kathleen

[Guest guest]

I read that goat cheese is neutral for type Os but goat milk is an avoid.

Anyone else? Louise

>From: " sherry mccartney " <sherrymccartney@...>

>Reply-egroups

>egroups

>Subject: Re: hi there

>Date: Mon, 10 Apr 2000 11:56:02 EST

>

>I eat goats yoghurt and sheeps yoghurt which is my favourite. But only once

>in a while as too much upsets me. Sherry

>

> >From: kmschafer101@...

> >Reply-egroups

> >egroups

> >Subject: Re: hi there

> >Date: Fri, 7 Apr 2000 21:44:30 EDT

> >

> >Hello Sari,

> >

> >I have never tried goat milk yogurt. I know goat milk is neutral for

>Type

> >0's. I will occasionally eat goat cheese. I stopped consuming dairy

> >regularly over 25 years ago. However, I can vouch for Solgar

>supplements.

> >I

> >take the Calcium, Vitamin D and Boron supplement daily.

> >

> >Kathleen

>

>______________________________________________________

>Get Your Private, Free Email at http://www.hotmail.com

>

______________________________________________________

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[Guest guest]

I eat goats yoghurt and sheeps yoghurt which is my favourite. But only once

in a while as too much upsets me. Sherry

>From: kmschafer101@...

>Reply-egroups

>egroups

>Subject: Re: hi there

>Date: Fri, 7 Apr 2000 21:44:30 EDT

>

>Hello Sari,

>

>I have never tried goat milk yogurt. I know goat milk is neutral for Type

>0's. I will occasionally eat goat cheese. I stopped consuming dairy

>regularly over 25 years ago. However, I can vouch for Solgar supplements.

>I

>take the Calcium, Vitamin D and Boron supplement daily.

>

>Kathleen

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

[Guest guest]

Your test worked! Have a great day!!!! From Middleton,WI

Deanna

>

>

>

>Hi there. i am testig if my postings are reaching you. Greetings.

>

>

>

>Claudio

>

>

>

>

>

>_________________________________________________________________________

>

>Get Your Private, Free E-mail from MSN Hotmail at

><http://www.hotmail.com.>http://www.hotmail.com.

>

>

>

>

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[Guest guest]

Hi there. Thank you.

Claudio

From: Fred & Deanna Voll <excelent@...>

Reply-candidiasisegroups

candidiasisegroups

Subject: Re: hi there

Date: Mon, 22 Jan 2001 22:35:28 -0600

Your test worked! Have a great day!!!! From Middleton,WI

Deanna

>

>

>

>Hi there. i am testig if my postings are reaching you. Greetings.

>

>

>

>Claudio

>

>

>

>

>

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[Guest guest]

Your letters are always so touching, Tom. I do wish you the best in life,

you sure sound like you deserve it!!!

Tammy

Have a Happy Day!

[Guest guest]

Hilda,

Welcome to the group, and we will be glad to help with any questions you

might have. I think I'd love to receive the recipe, and I sure there are

others on this list that would enjoy it also. If you are interested in

recipes, check out the Cook Right list. Right now the traffic is rather

light, since our list mom is on vacation. If you would like you can join to

look it over and make it where you go to the sight when you have time to

check for recipes and news. May you have a lot of good results with this way

of eating.

> Hi to everybody.... I have been reading your emails for the last three

months and only decided yesterday to join this lovely type O chat! I have

already learned to much from all of you during this time. I am lucky in

that my whole family is type O so I don't have to cook different meals.

What I do have a problem with is finding some of the more preferred healthy

stuff, and if I do find it, it costs an arm and a leg. For some reason,

South Africans are not really into the health thing yet and the products are

not cheap at all. Spelt for instance is about 8x the price of wheat flour!

I will definitely contribute more regularly and I hold thumbs for your 3

weeks in September. I will not join you, I love my bread too much!!!!

hehehehehe. If you are looking for a nice cake recipe, I have a carrot cake

one made with rye - delicious - not the typical rye taste at all!

>

> Regards from a sunny SA!

>

> Hilda Vosloo

> Bethesda cc

> Tel: 012 - 549 2621

> Cell: 082 922 9136

>

>

>

[Guest guest]

Welcome Bethesda cc,

You said you have a carrot cake recipe made with rye? Please post it.

Aloha from the Big Island of Hawaii,

CB

[Guest guest]

> 19/f...interested in online fun...you can see me and my friends on

> our webcams right this second at http://www.envy.nu/holly1

Wonder if she makes " housecalls " . Not for me of course, but I have

this " friend " . <wink> Yeah, that's it. A friend.

Just a wonderin'

Maurice

[Guest guest]

In a message dated 1/2/02 10:03:29 AM Pacific Standard Time, jjcathcart@... writes:

....... What is the doseage you are on? Normally you are started on a high dose then SLOWLY they drop it down. So..do not just stop...follow their directions as just stopping will cause havoc to your system.

hi joanne,

doc. put me on 4 new drugs, at the same time. plus i take syntroid, now for 9 years.(runs in the family)

pred:20mg.per day

ibs: no doseage shown, but its 4 pills a day. it says to take 1 or 2, 4 times a day, but i only started with the 4(doc's ok of course)

acephix:20mg. per day

amitrip:25mg. per day

at first the pred. made me very hyper..whew!

got my whole house cleaned!! and then some!

but now it seems the pred. is just causing hot flashes/sweats, shakeyness and bad bad moodiess..

its not really making me hyper anymore though, maybe the combo of the ibs/anti-dpression drug is calming the hyperness down. which both these drugs say, they will cause drowsiness.....i really don't know, maybe all these drugs are interacting in a bad way??? will tell doc tomorrow!

i have read many people here say that 20mg of pred. really isn't high, but my system is so sensitive to drugs, so therefore maybe thats high for me?

also, I NEVER STOP ANY DRUG WITHOUT DOC.'S OK!! i do know better in that respect.

thanks....

the one other time that i did stop the pred.

WAS DOC'S ORDERS, (bec ana was neg), this is the second time this month i have been put back on it.(pred)

doc. wants me to slowly decrease it by 5mg.

every three days, until i am off it.

(ONLY IF SCAN SHOWS NOTHING WRONG)

had this done today...

but what puzzles me, is that after only 3 days back on the pred. my liver enyzemes were down to 62...so why would he wean me off, if i am still having slightly elevated numbers??? won't they go back up after i stop it??

gastro says, liver enyzemes are not bad enough for a biopsy, bec 2nd and 3rd ana testing came back neg.

(but 1st one was sky high..1:320, so i don't know what in the world my body is doing!! very frustrating!!

doc appt. tomorrow. should have much more feedback.(good lord i need it) i am keeping my fingers crossed..

i am....feeling so much better(pain wise),

i don't feel like i have been hit by a truck anyways...LOL!

but don't know which meds. are making me feel better...scared to go off the pred. i really think its helping the fibromyalgia..???

can't be sure, heck doc's are not sure its that yet anyways, still guessing with me.....

i want this over with, i want to know what is wrong, then move on to controlling it...

or removing something...LOL!

what really bites, is that now i have to see a urologists, gynegologists, and maybe go to the university of ann arbor to see a hepatologists....

i know they are trying to rule everything out, but gosh, this guinea pig stuff is getting to me..LOL!

do you know of ANYTHING ELSE that can cause elevated liver enyzemes; other than AIH???

just curious....

thanks for the ear...

take care,

bert.

[Guest guest]

Bert,

I know that you have mentioned that the nearest Hepatologist is 3 hours away.

I also see a Hepatologist who is 1 hour from work, 2 hours from home. I

have a PCP and a local Gastro MD. The local MD monitors things for the

Hepatologist who is 2 hours from home. This works well for me. I wasted a

lot of time while my numbers were still up seeing the Gastro MD here. I

worked for him for 17 years and still have a lot of faith in him although he

admits (and having worked there I know) that he in 20 years of practice, has

only seen 4 patients with AIH. He has a very busy practice and is one of the

busiest MD's in the group. ( Group now has 15 MD's). My point after all this

rambling is that AIH is not a problem that even Gastroenterologist see

frequently. It might be worth your time to gather all your test results

scans, slides, reports of MRI's Ultrasounds and anything done related to the

AIH together and make the drive to see Hepatologist.

I know that when I got there myself the Hepatologist agreed that AIH is not

something that is frequently seen and that most MD's have a lot of concern

RE: Long term prednisone use. My Hepatologist said that a lot of GI doc's

try to taper patients off the prednisone to early for fear of the long term

effects of the high dose prednisone use. However this is the drug of choice

for our problem.

As my LFT's have not responded well to tapering down even slowly, I suffer a

lot of the side effects of prednisone. But what do you do? Some of us do

not respond as easily as others. As for the ANA I have had several and have

never tested positive.

Just my input. I know I feel now that in my situation the Hep/GI/PCP

connection works well for me.

Hope this helps and all goes well with your CT results tomorrow. I have to

have 2nd EGD with banding this Friday locally and then have appointment with

Hepatologist on Monday. I too have my fingers crossed.

Glad you are feeling better and sorry for the length of this post.

Cold and waiting for snow here in VA.