Sue

[Guest guest]

Hi

Thanks - that's good information.

I hope my insurance pays for this. The office seemed to indicated

it does.

They kept on saying that this is an expensive test - can I ask how much

they are charging you? Just in case!

I'm at 200mg Imuran (I have been at that level since May 1, 2001) -

and it doesn't seem to help bring my numbers down. I am getting the

same results (or was) at 20mg of prednisone when I wasn't on Imuran.

I have the box here at home - so in 2 months (my next appointment) I

take it into the lab.

Thanks again ;

Sue AIH 12/98

Colorado

meliss0618@... wrote:

Sue,

Hi. I had the Pro-Predict Metabolite Test done. It's a simple blood

test. At

the time I was on 50mg of Imuran. The test showed that the Imuran

was not

therapeutic. My doctor raised the Imuran to 75mg and after that

my levels

went down to normal. I think my doctor would have figured out to

raise my

Imuran on his own but the test also reveals if the Imuran is becoming

toxic

to your body which could be helpful for people on high doses. If

you get the

test done make sure you are covered by insurance. Blue Cross

orginally said

they would pay the claim and now they are not. I'm in the middle

of fighting

it and it looks like I'll win but it's a hassle.

AIH 9/00

NYC

[Guest guest]

Hi ;

I've been taking Imuran for over a year and a half. That's what

so discouraging. My dosage is at it's highest since May 1 of this

year at 200mg.

Sue AIH 12/98

Colorado

meliss0618@... wrote:

The Pro-Metabolite test was $270. Don't

get discouraged that the Imuran isn't working. I read in Dr. Palmers book

it takes Imuran three months before it starts working. Maybe it's just

taking a little longer. If it is ineffective for you there are other treatments

so don't get too upset until you speak to your doctor. Hang in there!!!!

[Guest guest]

Dear Sue...Riding a Chicken...That's a good one.

Congrats on your weight loss...Have you seen any

positive results because of this?

I used to be able to wear short skirts and heels to

accentuate my one of my best feature; my legs but

since my ankles swell so much every day, no more

heels.

Have a good one. Iris

--- Sue Plaster2 <splaster@...> wrote:

> on 8/20/02 11:45 PM, Iris Nosker at

> inosker@... wrote:

>

> > One knee was a lot brighter than the

> > other and you could see what really small leg

> bones I

> > have; the tech commented on that. The dr had also

> said

> > several times that I have really little legs. I

> > laughed and said " I look like a Popsicle.

>

> I also have little bird legs. My friends sometimes

> make fun of them, they're

> so little. I got them from my mother's family. All

> of them have little bird

> legs and big fat bodies. At least I no longer have

> the fat body since I lost

> 40 pounds.

>

> My son once said to me, " Mama, are those your legs,

> or are you riding on a

> chicken? "

>

> But I'd rather have these legs than big fat ones.

>

> Sue

>

>

__________________________________________________

[Guest guest]

Iris,

I lost the weight before I got RA. In fact, I was doing fine, with only Type

2 diabetes which I was able to control. Then I started exercising and

developed a new eating plan and managed to lose weight.

Ironically, about a year afterwards, I had a really bad year. In less than a

year, I was diagnosed with shingles, rheumatoid arthritis, bleeding ulcer

and anemia, and breast cancer.

Of course I know it wasn't the exercise and weight loss that caused all of

that. I know that I helped my diabetes and hopefully my heart. And I have

less weight for my poor joints to have to support, so that's good. So far I

have managed to keep the weight off, in spite of being on prednisone for a

few months. I did gain 8 pounds while taking radiation treatments following

a lumpectomy for the breast cancer. This is when you're supposed to lose

your appetite and lose weight. But I was on prescription iron for the

anemia, and I believe that it helped me get through radiation with few ill

effects.

Sue in NC

on 8/22/02 9:31 AM, Iris Nosker at inosker@... wrote:

> Dear Sue...Riding a Chicken...That's a good one.

> Congrats on your weight loss...Have you seen any

> positive results because of this?

[Guest guest]

Dear Sue...It sounds as though you have had more than

your share of health problems. I can only imagine the

scare with the breast cancer...did the radiation and

lumpectomy take care of it? I'm glad that the iron

seemed to help you through it. Has your dr found the

right mix of meds for you and how are you feeling now?

When I started taking Elavil I gained 20 lbs and that

was 10 years ago and I have never lost it...on the

other hand, I haven't gained any more. It seems as

though every job I get, the company has a lot of food

around. The last one catered food all of the time and

of course you can't turn it down when it is a free

lunch. I am one of those people who live to eat

instead of eating to live. Coming from a large cajun

family where food is a big part of hospitality, I am

surprised I don't weigh more. I have found that I

don't cook as much as I used to because I can't stand

very long without a lot of pain. So, that means easy

and fast food which we all know is full of fat grams.

My knee is really acting up again and I think I am

going to have to schedule that surgery I have been

holding off on.

Wishing you a serene evening. Iris.

> Iris,

>

> I lost the weight before I got RA. In fact, I was

> doing fine, with only Type

> 2 diabetes which I was able to control. Then I

> started exercising and

> developed a new eating plan and managed to lose

> weight.

>

> Ironically, about a year afterwards, I had a really

> bad year. In less than a

> year, I was diagnosed with shingles, rheumatoid

> arthritis, bleeding ulcer

> and anemia, and breast cancer.

>

> Of course I know it wasn't the exercise and weight

> loss that caused all of

> that. I know that I helped my diabetes and hopefully

> my heart. And I have

> less weight for my poor joints to have to support,

> so that's good. So far I

> have managed to keep the weight off, in spite of

> being on prednisone for a

> few months. I did gain 8 pounds while taking

> radiation treatments following

> a lumpectomy for the breast cancer. This is when

> you're supposed to lose

> your appetite and lose weight. But I was on

> prescription iron for the

> anemia, and I believe that it helped me get through

> radiation with few ill

> effects.

>

> Sue in NC

>

> on 8/22/02 9:31 AM, Iris Nosker at inosker@...

> wrote:

>

> > Dear Sue...Riding a Chicken...That's a good one.

> > Congrats on your weight loss...Have you seen any

> > positive results because of this?

>

>

__________________________________________________

[Guest guest]

Hi Sue:

Sounds like you are on the same medicine regimen I am

- metho, arava, and bextra! The metho and, at that

time, motrin were not helping keep my pain in check so

my doctor added arava, changed the motrin to bextra,

and that has done the trick. Still have the usual

fatigue and pain, but tolerable, and flares at times,

but these medications together are working very well I

think. Would still love to be on Embrel of course,

have been on the waiting list for almost a year, and

hopefully by the first of next year they will be

taking new patients. How much metho do you take? I

take 15 mg. every Friday and 20 mg. of Arava a day.

The bextra I take once or twice a day depending on my

pain level - it works so much better for me than the

Motrin did. I have not had any rash with the Arava

but do get the diarrhea - would almost rather have the

rash lol - and hope that your rash does not become

worse so that you can continue to get the benefits of

the Arava. I get blood work every 8 weeks and so far

the liver enzymes have been good - I worry about that

- the metho and the arava both have that side effect.

Well, I have rambled on enough - best of luck and hope

you are having a good day!

Kathe in CA

__________________________________________________

[Guest guest]

Hi Sue:

Sounds like you are on the same medicine regimen I am

- metho, arava, and bextra! The metho and, at that

time, motrin were not helping keep my pain in check so

my doctor added arava, changed the motrin to bextra,

and that has done the trick. Still have the usual

fatigue and pain, but tolerable, and flares at times,

but these medications together are working very well I

think. Would still love to be on Embrel of course,

have been on the waiting list for almost a year, and

hopefully by the first of next year they will be

taking new patients. How much metho do you take? I

take 15 mg. every Friday and 20 mg. of Arava a day.

The bextra I take once or twice a day depending on my

pain level - it works so much better for me than the

Motrin did. I have not had any rash with the Arava

but do get the diarrhea - would almost rather have the

rash lol - and hope that your rash does not become

worse so that you can continue to get the benefits of

the Arava. I get blood work every 8 weeks and so far

the liver enzymes have been good - I worry about that

- the metho and the arava both have that side effect.

Well, I have rambled on enough - best of luck and hope

you are having a good day!

Kathe in CA

__________________________________________________

[Guest guest]

Sue before you can start treatments for Hep C you have to get a prescription from your doctor and then it is up to you to call the Access Assurance Program. They will issue you an ID number. You cant get the treatments unless you get this number and most Doctors dont know about it, or they just dont tell you. I had to find out from another support group. I got my number Saturday and turned the RX and the ID number in to the Pharmacy. They in turn call the Pharmaceutical company and they send the Medicine to the Pharmacy who in turn gives it to you to take to your doctor and have them show you how to mix it and give yourself the injections. Its alot of bureaurcratic caca, but it must me done that way. They just dont send the meds out like other prescriptions. You have to be on a waiting list. I waited for about 4 months. I hope this helps.

Sandy

Sue and Gidget wrote:

What number are people talking about like Hanna is so excited she got her number. What number?Sue in WA

[Guest guest]

Hi, Sandy and everyone. i am not sure Group Health works that way with waiting

for a number

and the prescription routine. Greg's doctor was all ready to begin treatment so

maybe, being an

hmo, they have it available, i don't know but time will certainly tell. Strange

how things are

done. thank you so much. Hugs, Sue and gidget in WA state

[Guest guest]

my health insurance is with a HMO "CIGNA".

Terry, that's who I have, too. They have a tough reputation, but so far they haven't challenged or denied anything related to my treatment.

[Guest guest]

Hi everyone. I am 168 messages behind just on this list.

greg has his liver biopsy on Oct. fourth. Maybe after that, he can decide what

he's going to do.

I heard there's a safer treatment coming out in 2003. is that the pegasys?

our daughter was trying to core an apple to bake apples for her girl Scout

troop. The paring

knife slipped. Shge ended up at the hospital for several hours. She cut the

artery, nerve and

tendon on her left thumb. She has to have surgery next Wednesday and will have a

sling for

three to five months, and physical therapy twice weekly, and may never regain

all of the use of

her thumb. always something going on around here. i will do my best to catch up

over the

weekend.

Sue and Gidget in WA state

[Guest guest]

Oh Sue I hope that she will be alright. I do know what you mean about always something. My husband tore the main ligament in his left foot ankle. Has to have surgery on it. He is in a cast for now. Re: [ ] Re:Sue Hi everyone. I am 168 messages behind just on this list.greg has his liver biopsy on Oct. fourth. Maybe after that, he can decide what he's going to do. I heard there's a safer treatment coming out in 2003. is that the pegasys?our daughter was trying to core an apple to bake apples for her girl Scout troop. The paring knife slipped. Shge ended up at the hospital for several hours. She cut the artery, nerve and tendon on her left thumb. She has to have surgery next Wednesday and will have a sling for three to five months, and physical therapy twice weekly, and may never regain all of the use of her thumb. always something going on around here. i will do my best to catch up over the weekend.Sue and Gidget in WA state

[Guest guest]

Dear Sue and Gidget, Im not sure how things work in your state, im in NY but I believe when you get your priscriptions you will be given a number to call and you'll furnish some info and then you'll go on a waiting list, then in a few weeks to a few months they will send you your access assurance card with your number and you take that card with your prescriptions to the pharmacy. I think thats how it works everywhere. Sue

[Guest guest]

where would we call to get the number we need if the doc gives us a prescription

for Greg to

begin treatment? is anyone familiar with Group Health and how they do it since

they seem to

be their own little country by itself sometimes? this doctor made it sound like

he'd start Greg on

the treatments right away. so, if that's not true, how do i get the number? Who

would we call to

get it?

sue and gidget in WA state

[Guest guest]

Hi everyone. I sure hope a regains the use of her thumb. She has two little

ones to care

for and she just went through brain and spine surgery due to a birth defect

called Chiari: had to

have a craniectomy, a laminectomy and a dural decompression just Aug. 19th.

Everyone have a good evening. i will be off the computer tomorrow. Greg gets off

at eight

tonight and tomorrow we are going about four hours north of here to pick up the

solid oak

headboard friends of ours made for us that match our solid oak bedroom furniture

we bought

from them. they are wonderful with wood. And, unlike other people, they have not

shied away

from Greg because of his hepc.

Sue and gidget in WA state

[Guest guest]

and now today i find out that my guide dog must go to the vet Saturday, be put

under and

have her teeth and gums cleaned. what a fortune that costs! But, more than that,

she is so

close to me, being away from her is going to really upset both of us. a bond is

formed between

a person and their guide dog that words just are not adequate to explain. i am

sure she will pull

through, but i sure will be glad when it's over, and now I will use this

funny-feeling toothbrush

on her teeth. Never felt one before.

Sue and gidget, WA state

[Guest guest]

Hi, Sue and thanks for the info. when and if we get to that point, i will let

you know if it works

that way here. have a restful night.

sue and gidget

[Guest guest]

Hi, DZ and all. No, insurance does not cover anything with my guide dog. yes,

she has to be

put under anisthetic and I must leave her there from eight am till three pm. i

am going to buy a

few cans of food for her so eating won't be such a pain for a few days. i

imagine her gums will

be sore since they clean under them.

if i can answer any more questions about guide dogs, never hesitateto ask. it

doesn't make me

uncomfortable or anything like that.

have a good day.

sue and gidget

[Guest guest]

Sue and Gidget, our dogs went thru the teeth cleaning thing last year, and

we were SHOCKED that each had to have 7 teeth extracted! (Both were 9 at

the time.) (Also felt very guilty for feeding them non dogfood.) But they

came thru it like champs, so I'm sure your baby will too. Ours aren't

guidedogs, but they're the loves of our lives.

Re: [ ] Re:Sue

> and now today i find out that my guide dog must go to the vet Saturday, be

put under and

> have her teeth and gums cleaned. what a fortune that costs! But, more than

that, she is so

> close to me, being away from her is going to really upset both of us. a

bond is formed between

> a person and their guide dog that words just are not adequate to explain.

i am sure she will pull

> through, but i sure will be glad when it's over, and now I will use this

funny-feeling toothbrush

> on her teeth. Never felt one before.

> Sue and gidget, WA state

>

>

>

>

>

[Guest guest]

hello to diane and everyone. i did speak to Greg's doctor and he said to let him

know if the irritability and sickness continue. he wan't able to eat for a few

days.

Sue and gidget

[Guest guest]

Dear Sue,

I'll say a big one for Wayne. It sounds like you are both troopers - what a lot to go through. It's so wonderful that you are there for him. Take care of you, too )

Amy

[Guest guest]

thank you, Sue!

Fania

[Guest guest]

Hi Sue...welcome to the Group. I was dx AIH 1997 and also had to give up my

career at the same time. Your hep spec sounds a happy chappy. If I listen to

all my docs & specs advice, to quote from someone in this group, I should

have been on the other side of the dirt, ages ago. Its great that you're

down to 8mgs from such a massive dose initially. If you have any questions,

theres a lot of knowledgeable people here. I hope your having a good day.

Love Jan

>

>

[Guest guest]

To All, my prayers & thoughts go out to those in need. I wondered how

anyone's health is at the time of diagnosis- a rollercoaster or smooth sailing(as

much as it can be). I am only taking prednisone but it is a matter of time

before I start on Imuran too. I hate revolving my life around this 'illness',

but it has affected my life & my family's so drastically that I feel

trapped. Does anyone else feel this way? How 'bad' is this disease? It

seems that I find encouraging info at one site & frightening info at

another. Am I over exaggerating my ailments(just take them in stride) or

come to terms with the effects on my body. Hope I'm making sense but they

is no real support except from fellow 'sufferers'. Thanks, Sue

Ian & Janet wrote:

Hi Sue...welcome

to the Group. I was dx AIH 1997 and also had to give up my

career at the same time. Your hep spec sounds a happy chappy. If I listen

to

all my docs & specs advice, to quote from someone in this group, I should

have been on the other side of the dirt, ages ago. Its great that you're

down to 8mgs from such a massive dose initially. If you have any questions,

theres a lot of knowledgeable people here. I hope your having a good day.

Love Jan

>

>

[Guest guest]

Dear Sue:

Welcome to our group and I am sure you will find support here and many opinions and answers. It is so good to be in touch with others who are experiencing similar problems. I went for 10-12 years without knowing another soul who had autoimmune hepatitis. I did a lot of reading at the library before the days of the computer and internet. I read everything I could. I asked a lot of questions. One really good point that Allida made is to educate your family and best friends. I find that even after years of coping with this illness they still don't understand that this is not viral hepatitis, etc. You will need to reinforce the information over and over. (Even half the people in the medical profession don't know about this illness- so you have to educate your doctors and nurses as well.)

It is always a roller coaster initially and quite a shock. Most of us have found that we had been undiagnosed or misdiagnosed for months to years prior to the right diagnosis. I am sure I had it in my mid- thirties, although I wasn't diagnosed until mid-forties.

You can ask any questions you want here and people will respond. I think Tony's advice is very good - you can't make this the center of your existence - even though it is difficult at times, especially initially. Try to focus on your blessings instead and keep the faith. This will ease your fear and pain.

Good luck with your treatment and again, welcome.

Marty

Re: [ ] Sue

To All, my prayers & thoughts go out to those in need. I wondered how anyone's health is at the time of diagnosis- a rollercoaster or smooth sailing(as much as it can be). I am only taking prednisone but it is a matter of time before I start on Imuran too. I hate revolving my life around this 'illness', but it has affected my life & my family's so drastically that I feel trapped. Does anyone else feel this way? How 'bad' is this disease? It seems that I find encouraging info at one site & frightening info at another. Am I over exaggerating my ailments(just take them in stride) or come to terms with the effects on my body. Hope I'm making sense but they is no real support except from fellow 'sufferers'. Thanks, Sue Ian & Janet wrote:

Hi Sue...welcome to the Group. I was dx AIH 1997 and also had to give up mycareer at the same time. Your hep spec sounds a happy chappy. If I listen toall my docs & specs advice, to quote from someone in this group, I shouldhave been on the other side of the dirt, ages ago. Its great that you'redown to 8mgs from such a massive dose initially. If you have any questions,theres a lot of knowledgeable people here. I hope your having a good day.Love Jan>>