New to Group

[Guest guest]

Hi ,

I'm new to the group also. It sure is exciting to hear about some

successful treatment. What type of arthritis does your son have?

Kim & Logan 4 & 1/2

[Guest guest]

Tasha,

Welcome to the group. I heartily suggest you ask lots of questions and

visit our Bookmarks section. It's a great place to get

" qualified second opinions " from professionals. And, in most cases, you

can do it online. One great place to make inquiry is

s-Reiter . This is a epilepsy-specific clinic that treats people

with epilepsy from all over the world. Their director of therapy

research will actually respond to your specific questions via e-mail.

Having been diagnosed with epilepsy for 34+ years, I can honestly say

that I have never encountered an epilepsy clinic that treats people so

comprehensively as s-Reiter . To me, standard procedure means

things like a basic physical examination, blood work, EEG and/or MRI.

But, until I encountered s-Reiter , I never heard of a five-day

intensive evaluation which included all kinds of psychological testing

as well those tests already mentioned. Thanks to them, I am drug-free

(and rarely have seizures) - after having been placed on prescription

medication by neurologists for most of my life. I encourage you to take

a look at this world-renowned epilepsy clinic. They even have a

best-selling book which should available at your local public library.

It's called, Epilepsy: A New Approach.

Good luck.

Lamar

tah20 wrote:

> hello my name is tasha. I live in Kentucky and was recently told that

> I would have to go in for evauation of seizures. I have been having

> what everyone is considering seizures since I was just a child but

> haven't until recently been a concern of doctors. I would appreciate

> any information you guys can give me on things.

>

[Guest guest]

In a message dated 12/7/02 2:09:23 PM Pacific Standard Time, mariemk@...

writes:

> I've read some books and internet sites on Hep C, but am beginning to feel

> alone all over again. I'm looking forward to meeting others in the group

> and to learn of other peoples experiences.

>

Hi Marie, I am new here too, and from what I can see, you are definitely not

alone.

Welcome to the group,

(whose middle name is Marie)

[Guest guest]

Hi Marie, I'm Marilyn in IL. I was diagnosed with Hepatitis C, genotype 1A in

March of this year. Ten years ago, my liver levels were all over the map, but

have been normal for the last 6. I had a biopsy done in June and have no damage

so far. I got it from a blood transfusion after surgery when I was 10 or when I

was 12. That was over 40 years ago. My viral count was 401,000 at last count,

so I have decided not to take the treatment at this time.

There are so many wonderful people on this list, who all have different stories

to tell. But I can tell you that this is such a loving group, and you will feel

right at home here. I know what you mean about feeling all alone - when I was

researching on the internet, it scared me to death. Then I found this group

last spring. I have been given such good simple advice that has really helped -

drink lots of water, exercise even if it is a walk to the corner and back, take

a good multivitamin (I take Centrum Silver, no iron), and give yourself

permission to nap if you need it.

I hope others post as well, they are really a great group.

Marilyn

new to group

Hi everyone,

I've had Hep C since I received a blood transfusion in 1979 but only found

out about it in 1996, when I gave blood for my knee surgery. I'm sure this

is a very familiar story. I tried the interferon monotreatment in 1997-98,

and responded, but relapsed in about 6 months.

Now that my viral load is back around 2 million and my liver enzymes are

elevated again, my doctor is putting me on the combo treatment of Peg-Intron

and Rebetol beginning the middle of January, after my granddaughters first

birthday. I don't want to be sick for that.

I've read some books and internet sites on Hep C, but am beginning to feel

alone all over again. I'm looking forward to meeting others in the group

and to learn of other peoples experiences.

Thanks for being here,

Marie in NW Florida

[Guest guest]

Hi and Welcome!

Were you just diagnosed 3 yrs ago? Do you know your genotype and have

you tried the Pegelated Interferon? It's the newest drug and has a

better response rate.

Remember too that even though you have not gotten rid of the virus

itself, you have given your liver a rest while on the treatment. It

does help keep the progression of liver disease at a slower pace

while treating.

This disease is a " family affair " when it comes to trying to live

with it. Your wife is not alone and maybe you should find a support

group in your area so that you both will have some local help in

dealing with it. Family members often have a harder time of it

because they are watching their loved one going through this

treatment, and as we all do, they are hoping and praying the

treatment will " work " . They watch us go from seemingly healthy people

to seeing us sickly on treatment, unable to do the things we used to

do, become forgetful, lose weight, and moody. I do think it is harder

on them than it is us. They are afraid of losing us. I also think

they tend not to tell us how they are feeling, so they are bottling

up all these feelings. Just as we need a release, either through a

message board or a support group, they need one too.

The researchers have never been able to " cure " a virus and this is a

virus. Having it doesn't mean imminent death, or even death in 20

yrs. It can be controlled with the treatment, life style changes, and

nutritional changes. Most people will not die from this disease, but

with it.

I did treatment 4 different times in a 3 year span. None of

them " worked " but the good news was in my biopsies. My liver disease

has not progressed into cirrhosis and I am a firm believer that doing

all those treatments helped keep that from happening. I am Stage 3

Grade 2 bridging fibrosis so I am pretty close to cirrhosis. I

believe that if I had not done treatment, I would be in cirrhosis by

now.

Please remember that the viral load has nothing to do with the amount

of liver damage you may have. It fluctuates wildly on its own. There

are people in the late stages of cirrhosis who have a very low viral

load and normal liver enzyems. Others have very minimal damage and

have very high viral loads and high enzymes. The researchers have

found that even the ALT liver enzymes are not a true indicator of the

amount of liver damage we may or may not have.

This is a very helpful group of people here and they offer lots of

support. Please feel free to tell your wife to come post here if she

would like to as well. It may make her feel a bit better hearing from

others.

LeighAnn

http://www.geocities.com/1Leighann

[Guest guest]

Scogdw,

Welcome to our group. I'm on my second treatment, this time with the

Rebetol. Last one didn't work well, relapsed in 8 months. I still have a

long way to go, 4th shot last Monday. I have cirrhosis and am genotype 1a,

but I'm hopeful that I'll do better this time. The people here are great,

I've learned a lot.

Marie in FL

[Guest guest]

Welcome to the group! I am Dana in PA! I did treatment 3 times and

failed. So alot of us hear on in same or different situation. But

we all have hepc and this is a great site for info!!.....Dana in PA

> HI all:

> I'm new to this site, but not to hep-c I've had it three year now

> and I've been through two coarse of combo treatment Regular and

Lead.

> Both seem to have failed,

[Guest guest]

Hi ,

I'm not on treatment yet, but we all know the panic that you feel when you get

the diagnosis. I was terrified to get the liver biopsy, but it's the only way

you can know what's really going on. I expected the worst, but found I have no

damage yet. My genotype is 1B, so my chances to respond to the medication aren't

that great and I don't have too many bad symptoms so I decided not to go on

medication for the time being. I guess the best I can say is that this disease

isn't going to kill you tomorrow, and try to take it one day at a time.

Everybody reacts differently to the TX, from what I've learned on this list.

There are so many people who are here for you if you have questions or if you

just need to vent.

Marilyn

Re: Re: New to group

I am new to the group also....was diagnosed 2 years ago....got scared and

didn't get my biopsy....now it is to be in March...I finally hadd to face the

facts......can anyone tell me what I am in store for as I start this journey?

[Guest guest]

Hi Leighannv

I have type 1a and have done peg. I'm only at stage one on my

fibrosis so that good, but my liver alt and ast are markedly high

160alt 60ast. That is they were till last week. I've been off

treatment two mounth and rebounded to 17 million copy within twenty

days of last shot. Last week ssome new blood work came back clean, no

virus, and normal liver functions. Doctor is not sure what to think.

He has never seen anything like it before. I'm headed to a hep-c

specialist in march to see what he thinks. Have you ever heard of any

thing like this.

MrDan

> Hi and Welcome!

>

> Were you just diagnosed 3 yrs ago? Do you know your genotype and

have

> you tried the Pegelated Interferon? It's the newest drug and has a

> better response rate.

>

> Remember too that even though you have not gotten rid of the virus

> itself, you have given your liver a rest while on the treatment. It

> does help keep the progression of liver disease at a slower pace

> while treating.

>

> This disease is a " family affair " when it comes to trying to live

> with it. Your wife is not alone and maybe you should find a support

> group in your area so that you both will have some local help in

> dealing with it. Family members often have a harder time of it

> because they are watching their loved one going through this

> treatment, and as we all do, they are hoping and praying the

> treatment will " work " . They watch us go from seemingly healthy

people

> to seeing us sickly on treatment, unable to do the things we used

to

> do, become forgetful, lose weight, and moody. I do think it is

harder

> on them than it is us. They are afraid of losing us. I also think

> they tend not to tell us how they are feeling, so they are bottling

> up all these feelings. Just as we need a release, either through a

> message board or a support group, they need one too.

>

> The researchers have never been able to " cure " a virus and this is

a

> virus. Having it doesn't mean imminent death, or even death in 20

> yrs. It can be controlled with the treatment, life style changes,

and

> nutritional changes. Most people will not die from this disease,

but

> with it.

>

> I did treatment 4 different times in a 3 year span. None of

> them " worked " but the good news was in my biopsies. My liver

disease

> has not progressed into cirrhosis and I am a firm believer that

doing

> all those treatments helped keep that from happening. I am Stage 3

> Grade 2 bridging fibrosis so I am pretty close to cirrhosis. I

> believe that if I had not done treatment, I would be in cirrhosis

by

> now.

>

> Please remember that the viral load has nothing to do with the

amount

> of liver damage you may have. It fluctuates wildly on its own.

There

> are people in the late stages of cirrhosis who have a very low

viral

> load and normal liver enzyems. Others have very minimal damage and

> have very high viral loads and high enzymes. The researchers have

> found that even the ALT liver enzymes are not a true indicator of

the

> amount of liver damage we may or may not have.

>

> This is a very helpful group of people here and they offer lots of

> support. Please feel free to tell your wife to come post here if

she

> would like to as well. It may make her feel a bit better hearing

from

> others.

>

> LeighAnn

> http://www.geocities.com/1Leighann

[Guest guest]

Hi ,

Nausea, tiredness, swollen stomach - yep, all symptoms of Hep C.

These are some of the things the Be In Charge nurse at Schering told me to do

that really helped:

The nausea is probably my biggest problem, and meat is the worst! I'll cook

dinner and sit down to eat it, and as soon as I smell the meat, that's it!

Protein is very important to your energy level and you should have 60 grams of

it a day. The nurse told me to go to a health food store and get protein drinks

so I can get the 60 grams. Make sure the protein drinks have *no* iron in them,

Hep C prevents your body from getting rid of iron, which then gets stored in

your liver and does damage to it. Now, the protein drinks can be pretty

disgusting! Some of them are thick, so those I put into a blender and add skim

milk to thin it out. I suppose plain water would be fine, too. The thinner,

" fruity " tasting drinks are way too sweet for me, so I add some lemon juice to

cut down the sweetness. And I eat fish often because I can tolerate it more

than meat.

Drink plenty of water. I go nowhere without a water bottle with me. You should

drink 1 oz. for every 2# of body weight per day. Not quite sure what the water

does, but someone on the list will know.

Take a good multivitamin with *no* iron. I take Centrum Silver, but there are

plenty others out there. I just picked that one because they had a whoppo

bottle of 300 on sale at Target for $16.00.

As for the constant exhaustion - I was my own worst enemy when it came to naps.

I thought I had no right to be tired when I had only been up for an hour in the

morning and had just gotten 10 hours sleep overnight, so I wouldn't allow myself

to take naps. When I would give into a nap later in the afternoon, I'd be down

for the count for 2 hours! The Be In Charge nurse told me not to fight the

nap, if I gave into it right away, I would sleep less often and have more

energy.

Also, she said I should exercise every day without fail. She said that even if

I walked to the corner and back and came home and took a long nap, do it. She

said that each day I would build up more energy and not feel so tired.

I can't believe how much better I started feeling after I made these small

changes. I couldn't remember the last time I didn't feel exhausted all the

time! I have good days and bad days now, mostly good, but I give myself

permission to have the bad ones.

As far as the swollen stomach, can't help you there, LOL! I'm a thin person,

but never wear anything that isn't loose because I look 5 months pregnant all

the time! If I could only " grow " hips and a butt.......

Just a note about your biopsy - make sure your doctor is going to give you

something when he does it, some of the people on the list have had painful

experiences with biopsies. My hepatologist gave me a lidocaine drip and told me

it would relax me. I fell asleep through the whole thing, thankfully.

Good luck to you!

Marilyn

Re: Re: New to group

Hi Marilyn.....thanks for responding to my letter....yes...I have a lot of

questions and symptons that I feel are related to the HC....maybe you can tell

me...nausea....the constant tiredness......and my stomach stays so swollen.....I

just wonder if there is anything my family doctor can do forr me prior to the

biopsy......thanks for listening.....dixi29706@...

[Guest guest]

Hi, Rhonda.

New to Group

Hello Everybody,

My name is Rhonda and I was diagnosed with Hep C 5 years ago. I

have been through 4 different sets of treatments in all that time.

That's also including a liver study program in Chapel Hill, NC. Which

almost did me in. The last treatment was the peg. Sorry to say that

I did not respond. So, I have been off treatments for a little over a

year. Still having many problems because of treatments, what you

might call side-effects from treatments. I would like to know if

anyone else has had post problems...I really need to talk to someone

about this.

Anyways...to change the subject a little bit. My prayers are with

everyone. It's really hard having Hep C and going through all the

meds. It's so great to have a support group you can talk to because

they all know exactly what you are going through and how you feel.

Hang in there and keep trying!

Hep C Buddy

Rhonda

[Guest guest]

Hi Rhonda,

Welcome to the group. I am a newcomer myself, recently subscribing because I

cannot handle this hellish treatment alone. I have started my 5th month and I

thought for sure that I had seen the worst of the side effects, but evidently

not.

The last week I have been extremely weak, feeling almost faint. (I am on

Procrit too, as the Peg/Rib has caused amenia.) It is almost too much for me to

handle...and I have an extremely high pain threshold.

I can't imagine going through this hell as long as you have Rhonda! Good luck.

My question is should you have times on this treatment when you just don't feel

like moving or getting out of bed?

jay

[Guest guest]

Welcome Rhonda!!

[Guest guest]

Marilyn,

Thanks for the tip about eating protein...I am on my 21st week of Peg treatment

and have felt absolutely as tired, weak, fatigued as I have EVER been. I am

already on Procrit because of anemia. I will try some of those protein drinks

and try eating more meat! Thanks and good luck with your treatment!

jay

[Guest guest]

Jay, I'm glad I could help! Good luck to you, too.

Marilyn

Re: Re: New to group

Marilyn,

Thanks for the tip about eating protein...I am on my 21st week of Peg

treatment and have felt absolutely as tired, weak, fatigued as I have EVER been.

I am already on Procrit because of anemia. I will try some of those protein

drinks and try eating more meat! Thanks and good luck with your treatment!

jay

[Guest guest]

Thank you for the welcome, and the tip on a pedi. Opth. We are in the process of finding a new Opth. now. I hope n's having wonderful days. I am sorry to here about your chapter closing. I am in the process of trying to become involved with a chapter here. I live in San , Texas. Thanks for your email.

New to group

Hello, My name is and I am new to this group. My son Tyler was diagnosed with JRA at 15 months. It was at the time in his left hip, knee and ankle. We were very fortunate to have an early diagnoses and treatment. He was quickly put on Naporsyn and Zantac. He reacted great to the meds and did so well that when he was 3, they decided to take him off the meds. We then only treated occasional problems with ibuprofen. We thought we were in the clear until three months ago. Tyler is now 9 and we started noticing a severe change in his handwriting at school. He never had wonderful hand writing but we noticed it going from a third graders handwriting to a first graders in a matter of a month. During this time we also noticed him stretching his fingers a lot and crossing them a lot. He said it felt comfortable that way. Well we watched him for a month we started noticing slight curvatures in his index and pinky fingers so we took him to the Dr. and our suspicions were confirmed the arthritis was in his Hands and back with full force. So in the last two months he has been put back on Naporsyn and Zantac and is now seeing an OT weekly. I went in search on the internet of support and new treatments. This is were I found your group. I have discovered when your child goes for a long period of time without any problems, you deceive yourself into thinking that JRA has disappeared. My husband and I feel like we are starting all over again with this disease and we are determined now more than ever to be involved with the Arthritis Foundation and to bring awareness to the public. The School district were we live has been very supportive and for that we are very grateful. We have discovered we too, like so many others, we had a different face on JRA. We always thought Tyler had JRA so mild and that we wouldn't fit in with support groups because his "face" wasn't that of a child with an illness. But in researching and seeing children with JRA I could easily put my child's face in any one of your children's pictures or insert his name in anyone of your stories and they would be the same. And for that reason alone I would like to thank each of you in this group for sharing your stories, you have made me realize my son does have a place among the JRA community and we will continue to play baseball, and soccer and golf, and watch him run and play like all of his other friends knowing that each day he deserves to do everything just has he always has. And although we are not new to JRA, we are again facing challenges and questions about it. So, thank you again for this group and I look forward to checking my email daily to share in your stories.

and Tyler(9) To leave this mailing list, send request to: -unsubscribe

[Guest guest]

Hi Lani !

Glad you found this group. One place you might want to start looking for answers

through may be the Institute for the Achievement of Human Potential. There web

site is:

http://www.iahp.org/

When you get to the main page look further down to "

The Institutes Reports " then click on the word seizures.

This should give you some great information to get you started on the road to

answers.

Good Luck.

M

[ ] New to group

Hi! I am the mother of an 11 month old boy who has some neurological

diffrences, both anatomical and functional, and who suffers from

seizures. He has been on Phenobarbital since 3 days old to keep them

under control. We expected him to not need the medication for very

long, but now it seems like this is going to be a chronic problem

and we do not want our baby on drugs. Not only are the side effects

of the medication becoming more obvious, but we have not seen any

outward signs of a seizure for many months (EEG does show

epileptiform activity in both hemispheres seperatly- even though it

was not associated with physical signs). We are now looking into

adding some other therapies to his life. As of now he does the

pheno, he takes homeopathic remedy, and gets craniosacral therapy

every other week. We are looking into adding gental chiropractic. If

anyone has any other ideas that might be worth looking into, please

let me know. Also I am interested in finding out more about

Phenobarbital so if you have , or know where I might find more

information about it I would appriciate it ( I would like to be more

knowledgeable about it before talking to his neurologist). Thank you

for the group- I am excited to have a place to look for support and

ideas!

Best wishes-Lani, Mom of

[Guest guest]

Dear ,

I read your e-mail and can identify with what you wrote. I think you speak for many parents of children with JRA. The face of this disease has many different features and it is sometimes difficult to figure out where our children fit in; but, the issues and the fears are the same.

Our son Adam is 10, he has big issues with handwriting! He also has arthritis of the spine, but is well controlled with medication. He too plays baseball, swims everyday and runs around outside with his friends. I sometimes feel this activity makes my job harder, I have make the doctors look past this and take notice of things such as handwriting and fatigue.

I find this support group very helpful; although, I don't post very often- I read every email and have learned a great deal.

Take care and keep in touch.

New to group

Hello, My name is and I am new to this group. My son Tyler was diagnosed with JRA at 15 months. It was at the time in his left hip, knee and ankle. We were very fortunate to have an early diagnoses and treatment. He was quickly put on Naporsyn and Zantac. He reacted great to the meds and did so well that when he was 3, they decided to take him off the meds. We then only treated occasional problems with ibuprofen. We thought we were in the clear until three months ago. Tyler is now 9 and we started noticing a severe change in his handwriting at school. He never had wonderful hand writing but we noticed it going from a third graders handwriting to a first graders in a matter of a month. During this time we also noticed him stretching his fingers a lot and crossing them a lot. He said it felt comfortable that way. Well we watched him for a month we started noticing slight curvatures in his index and pinky fingers so we took him to the Dr. and our suspicions were confirmed the arthritis was in his Hands and back with full force. So in the last two months he has been put back on Naporsyn and Zantac and is now seeing an OT weekly. I went in search on the internet of support and new treatments. This is were I found your group. I have discovered when your child goes for a long period of time without any problems, you deceive yourself into thinking that JRA has disappeared. My husband and I feel like we are starting all over again with this disease and we are determined now more than ever to be involved with the Arthritis Foundation and to bring awareness to the public. The School district were we live has been very supportive and for that we are very grateful. We have discovered we too, like so many others, we had a different face on JRA. We always thought Tyler had JRA so mild and that we wouldn't fit in with support groups because his "face" wasn't that of a child with an illness. But in researching and seeing children with JRA I could easily put my child's face in any one of your children's pictures or insert his name in anyone of your stories and they would be the same. And for that reason alone I would like to thank each of you in this group for sharing your stories, you have made me realize my son does have a place among the JRA community and we will continue to play baseball, and soccer and golf, and watch him run and play like all of his other friends knowing that each day he deserves to do everything just has he always has. And although we are not new to JRA, we are again facing challenges and questions about it. So, thank you again for this group and I look forward to checking my email daily to share in your stories.

and Tyler(9) To leave this mailing list, send request to: -unsubscribe

[Guest guest]

Hi New Member,

There are a lot of questions you need to ask your Dr. I wonder why

you were told you have 1 or 2 years? A lot of your next steps will

be determined by your biopsy results and your genotype. The genotype

needs to be done before you start treatment. My viral load went to

zero within 2 weeks of starting treatment. At zero there isn't

enough RNA material to get an accurate viral count.

What is the best treatment? Which tastes best Coke or Pepsi? It

depends on the patient. Some people handle the side effects better

than others. Everyone has their own " set " of side effects.

Will you be able to work during treatment? Coke or Pepsi again,

depends on the patient. How physcial/stressful is your job?

LeighAnn will have a bunch of ideas and things to discuss with you

when she gets on-line. Check out her website:

www.geocities.com/1Leighann. Scroll down to the link buttons. She

has compiled a ton to information and keeps it current.

There are support groups in Fresno and Stockton you could get

involved with.

Keep us updated on your progress, Glenn

> I will be starting treatment next week or so. Don't know where to

> start. Did blood work and liver biop.last week. Don't know genome

type

> yet. What's the best treament out there? Will be talking to doc's at

> UC in California by video conference this week I hope.

What ?'S

> should I be asking?I live in the Sierra's behind Yosemite Nat'l

Park.

> Last year my viril load was off the chart. Doc said I have a year or

> two. So here I go. Can I still go to work while doing the treatment?

> Thanks for any help.

[Guest guest]

Hi and welcome to the group!!

What were the results of your liver biopsy? You need to know what

Stage and Grade of liver disease you have. If you don't have those

results yet, do NOT start treatment until you get them. It's possible

the biopsy will show you don't have any or enough liver damage to

warrant even doing treatment. Also, get the Genotype test back before

deciding! Many doctors rush to treat, even when it's not necessary.

As for your viral load...mine goes up and down all the time. It

naturally fluctuates. Mine has been up over 4 Million and 6 months

later, with no treatment whatsoever, it was down to 476,000. Viral

load and Liver Enzyme tests are NOT an indication of a lot of liver

damage.

If your biopsy warrants treatment, Stage 3 Fibrosis, then I would ask

that the dr give you Pegasys + Ribavirin. Genotype 1 does not respond

well to interferon, but of the 2 different Peg interferons out there,

Pegasys by Roche is a better drug.

I'm down here in Bakersfield! There is a support group in Hanford if

that is close enough for you to get to. I can get the info for it and

pass it along here if you would like.

Questions I would ask are:

Will I be put on anti depressants prior to treatment or sometime

during treatment?

How often will bloodwork be done?

Will I get a copy of every lab and test report?

How long will I be on treatment? (this varies depending on genotype)

What can I expect in the way of side effects and how do I manage them?

Thesea are only a few questions but they are important ones to ask.

If you need any more help please don't hesitate to ask. The people on

this board are very helpful and are in various stages of disease &

treatment.

LeighAnn

http://www.geocities.com/1Leighann

[Guest guest]

i was just reading your response to the person getting ready to start

treatment. i was diagnosed last Sept. and it totally crushed me. my dr. said i

am a

type 1 and early stage of the disease. he wanted me to start treatment and i

was but since has decided to wait. wait for what i don't know but i will wait. i

was thinking of getting another biopsy to see if it has progressed. so some

people don't ever have to take treatment?/ is that what i am getting from you?

nancy

[Guest guest]

Hi ,

It's such a blow to get this diagnosis, we all know what you mean when you say

you were totally crushed. That's how I felt last year when I heard it.

I'm genotype 1B. I had a biopsy last June that showed no damage. I know I've

had this for many, many years, so I decided against treatment at this time. I

may go the rest of my life and never need to do the tx. If things change, I

will do the treatment. It sounds like your doctor is taking a conservative

approach, because sometimes the side effects of the treatment can be worse than

what you're experiencing from the disease.

I guess if I've gone 45 years and have had no liver damage, there must be others

like me. The one thing I've learned from this disease is that it doesn't have

to be a death sentence.

Marilyn

Re: Re: new to group

i was just reading your response to the person getting ready to start

treatment. i was diagnosed last Sept. and it totally crushed me. my dr. said i

am a

type 1 and early stage of the disease. he wanted me to start treatment and i

was but since has decided to wait. wait for what i don't know but i will wait.

i

was thinking of getting another biopsy to see if it has progressed. so some

people don't ever have to take treatment?/ is that what i am getting from you?

nancy

[Guest guest]

Hi .

I am sure you are still trying to get used to being told you have

AIH. This is the best place to get the information and support that

will help you find the coping skills you will need. We are not

doctors, and will always caution you to check with your doctor.

The first suggestion has to do with what you are already doing,

learning about it. A good starting point and a good reference tool

is a book by Palmer, M.D. " Hepatitis and Liver Disease " ;

the book gives you a lot of basics about the liver and liver disease

in general and has a chapter devoted to AIH. It is not terribly

technical, written so the average person can understand. I got a

copy @ & Noble, and others have gotten it thru Amazon.

Second: ask questions here. Someone will respond, in fact, it is a

most prolific group, and you will always find someone who will share

what they have been thru. Some are newly diagnosed like you, others

are doing fairly well, some even in remission, and still there are

some who are post transplant...so you will find a wide range of

experience with this disease. Having said that, however, it is hard

to tell you what exactly to expect, as each person's experience can

differ.

AIH is an autoimmune disease of the liver. Your body has produced

antibodies which are attacking your liver, mistaking it for an

invader. Your liver responded by becoming inflamed, which can lead

to cirrhosis if it does not abate. One of the responses to the

inflamation is for the liver to produce higher than normal levels of

certain enzymes. Prednisone is used to try to control the

inflammation, and the imuran to suppress your immune system.

Having started treatment, your doctor will monitor your response

with bloodwork..how often varies. They will be looking @ your liver

function...enzymes...to tell them if the medication is reducing the

inflamation. The goal is to stop the inflammation and get you into

remission. As they monitor you, they will try to reduce the amount

of prednisone...wean you down...as long term prednisone use is hard

on the body, while still working on getting you into remission.

Sounds as if your doctor is very optimistic about your treatment.

Follow his directions. Try to get rest...overdoing will just impede

your treatment. Eat healthy, excercise as you can tolerate, and do

not take any OTC or any other med without clearing it with your doc.

Understand, the causes of this disease is nothing you did, nothing

yo caught or can give to anyone. There are over 80 autoimmune

diseases out there, and you happen to have one of them...it is sort

of the luck of the draw as to whether someone ends up with one at

all or one specific one...or even 2 or 3. Theories abound about

autoimmune...most common being that there is a genetic

predisposition that is triggered by something in the environment, be

it a virus, infections, medication, or sometimes that remains a

mystery.

Take Care, . Keep us posted.

nne

> I was just diagnosed with autoimmune hepatitis. I started

treatment three

> days ago of 30mg prednisone and 100mg of Imuran. I had never

heard of this

> before and it is a little scary. Can anyone tell me what to

expect? The DR says

> that I am at a stage 1 and only 15% of my liver has been affected

so far. I

> have read that catching this early means a good chance of getting

it under

> control with a good prognosis. Any assist in understanding this

disease would be

> appreciated. Thanks.

[Guest guest]

Welcome . Sorry that you have this dx

too….but you will find tons of information here. Just jump in and

ask questions…..Debby

[ ] new to

group

I was just diagnosed with autoimmune

hepatitis. I started treatment three days ago of 30mg prednisone and

100mg of Imuran. I had never heard of this before and it is a little

scary. Can anyone tell me what to expect? The DR says that I am at

a stage 1 and only 15% of my liver has been affected so far. I have read

that catching this early means a good chance of getting it under control with a

good prognosis. Any assist in understanding this disease would be

appreciated. Thanks.

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[Guest guest]

HELLO STELLA,

LET ME SAY WELCOME TO THE GROUP.

LET ME ALSO SAY DON'T WORRY ABOUT YOUR COMPUTER SKILLS. THAT IS NOT WHAT IS IMPORTANT HERE. WHAT MATTERS THE MOST IS THAT YOU CONTINUE TO FEEL FREE TO COME HERE AND TELL US HOW YOU ARE FEELING PHYSICALLY,AND EMOTIONALLY AND WHAT IS GOING ON IN YOUR LIFE TODAY.

ALL OF US SHARE ONE THING AND THAT IS THAT WE ARE ALL IN PAIN FROM AN INJURY OR A DISEASE. WE ALL NEED TO HAVE A PLACE THAT WE CAN GO AND LET OFF STEAM FROM THE STRESS THAT COMES WITH CHRONIC PAIN.

DON'T HESITATE TO COME HERE AND SOUND OFF AND ASK FOR HELP. I HAVE FOUND THAT THIS IS A GOOD PLACE TO COME TO AND LET YOURSELF TALK ABOUT WHAT IS BOTHERING YOU. THERE IS ALWAYS SOMEONE WHO WILL OFFER YOU A SHOULDER TO LEAN ON AND WHO UNDERSTANDS HOW YOU FEEL.{ HAVING TO DEAL WITH ALL THE PAIN THAT YOU ARE IN.}

I HAVE CONTINUOUS PAIN IN MY NECK AND LOW BACK DUE TO RUPTURED DISKS IN BOTH OF THOSE AREAS. I ALSO HAVE SEVERE HEADACHES AND ALSO HAVE PAIN IN MY LEGS AS WELL.

IT IS A HARD THING TO HAVE TO LIVE WITH PAIN 24/7,BUT THAT IS WHAT I DO EVERY DAY.

SINCE YOU ARE A PART OF THIS GROUP YOU ALSO KNOW WHAT I AM TALKING ABOUT.

IT IS SOMETIMES HARD TO ACCEPT THAT OUR LIVES HAVE CHANGED DUE TO THE PAIN THAT WE ARE IN,HOWEVER THAT IS EXACTLY WHAT WE MUST DO IN ORDER TO MOVE FORWARD WITH OUR LIVES.

I GUESS THAT I WILL STOP FOR NOW.

I HOPE THAT I HAVE BEEN ABLE TO HELP YOU IN SOME SMALL WAY.

FELL FREE TO EMAIL ME WHENEVER YOU NEED TO TALK TO SOMEONE.

UNTIL THAT DAY,TAKE CARE AND DON'T GIVE UP.

SINCERELY,

LARRY{GULLEYWASHER6869}

Stella <stella44446@...> wrote: hello everyone. I'm new here. Not very good with the computor so will see how this goes.I suffer with chonic neck back arm leg pain and severe headaches like many of you. I look forward to being a part of this group and look forward to learning about everyone and learning from everyone.