Concerned

[Guest guest]

Hi Joy,

My son has Hep C and so far, it's not progressing. He was diagnosed three

years ago. I have Autoimmune Hepatitis but there's no relationship between

the two diseases.

There are some differences between AIH and Hep C in the earlier stages, but

they also have much in common. Both are incurable and both eventually will

require a liver transplant unless they (hopefully) respond to treatment. I

think (but I'm not sure) that Hep C progresses more slowly than AIH.

Either that, or AIH isn't as readily diagnosed so it seems like it

progresses quickly. Also, since AIH is an autoimmune disease (the body

attacks itself) it's treated with immunosuppressants like Imuran which is

used to suppress organ rejection. Imuran would not be applicable for

someone with Hep C. Recently I've read several times that more and more

people who have been diagnosed with Hep C develop AIH. What that seems to

indicate is that Hep C might trigger the autoimmune response that causes AIH.

I suspect that the reason the two diseases might not sound alike is because

people with autoimmune diseases tend to develop more than one of them where

Hep C is a distinct and individual disease, though perhaps even more

frightening because (and (I'm not sure) it doesn't have the benefit of

responding to specific treatment like AIH does.

Many of us with AIH and other autoimmune diseases may sound like we have

entirely different symptoms than people with Hep C. I personally suspect

that a large number of those symptoms are caused by the meds we take and

not the disease.

All of the above is just a brief summary of my personal perceptions so

don't take them to be worth more than possibly some flawed insights!

Take care,

Geri

[Guest guest]

Hi Geri,

Thanks for the information on AIH vs Hep C. I've noticed on this site that AIH

is the disease most talked about. Thought it might be another name for Hep C.

I need to read up on it too. The side effects of the treatments have some

similarities though. Do you know if it is possible to keep it from progressing

just by eating the right foods and taking care of yourself. I've always been

very active and healthy. Still don't feel unusually tired. No symptoms I can

pinpoint. My job sometimes turns my days and nights around (like last night).

Need to stay on a regular sleep schedule.

I figure I've had Hep C around 20 years. It may be about time for symptoms to

begin to pop up. Time will tell. My lab work should show if there is anything

else going on other than Hep C and if I will be able to take treatments or not.

With as much blood as I've had drawn, they should be able to tell my lives

history. Scary thought!!

Thanks again for the information. I always like to hear of someones personal

experiences. Sometimes it's a lot more helpful than what your Dr. or an article

tells you what might happen.

Take care,

Joy

Re: [ ] Concerned

From: Geri Spang <spangs@...>

Hi Joy,

My son has Hep C and so far, it's not progressing. He was diagnosed three

years ago. I have Autoimmune Hepatitis but there's no relationship between

the two diseases.

There are some differences between AIH and Hep C in the earlier stages, but

they also have much in common. Both are incurable and both eventually will

require a liver transplant unless they (hopefully) respond to treatment. I

think (but I'm not sure) that Hep C progresses more slowly than AIH.

Either that, or AIH isn't as readily diagnosed so it seems like it

progresses quickly. Also, since AIH is an autoimmune disease (the body

attacks itself) it's treated with immunosuppressants like Imuran which is

used to suppress organ rejection. Imuran would not be applicable for

someone with Hep C. Recently I've read several times that more and more

people who have been diagnosed with Hep C develop AIH. What that seems to

indicate is that Hep C might trigger the autoimmune response that causes AIH.

I suspect that the reason the two diseases might not sound alike is because

people with autoimmune diseases tend to develop more than one of them where

Hep C is a distinct and individual disease, though perhaps even more

frightening because (and (I'm not sure) it doesn't have the benefit of

responding to specific treatment like AIH does.

Many of us with AIH and other autoimmune diseases may sound like we have

entirely different symptoms than people with Hep C. I personally suspect

that a large number of those symptoms are caused by the meds we take and

not the disease.

All of the above is just a brief summary of my personal perceptions so

don't take them to be worth more than possibly some flawed insights!

Take care,

Geri

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

[Guest guest]

Hi Joy,

I don't know if eating healthy foods and taking care of yourself will stop

the disease from progressing, but it's possible. Until we get sick, most

of us don't give that much thought to what we eat and whether our lives are

healthily structured, so it's hard to tell if the disease could have been

slowed by doing things differently. I never did drink very much and almost

not at all during the years before I was diagnosed. If I'd been even a

moderate social drinker, perhaps the liver inflammation and cirrhosis would

have advanced more quickly. I've also never taken so-called recreational

drugs of any kind (no criticism of anyone, anywhere, intended, it just

didn't suit my " control freak " personality " . But, on the other hand I

also have never taken vitamins or other supplements that might have made my

liver stronger. In hindsight, it's impossible to know what could have been

done.

But, once you've been diagnosed with liver disease, most of us know what we

have to do to try to keep from aggravating the condition. Most important

of all, in my opinion, is to locate a doctor (preferably a Hepatologist

attached to a major medical center) who you trust and respect. Then,

follow that doctor's instructions to the letter as far as

lifestyle and medical regimens are concerned. It might be easier to follow

the medical instructions than it is to locate the right doctor. There

has to be a good match and mutual respect.

Sleep disorders seem to be fairly common to most people with liver disease.

I've had problems for years and many others mention chronic insomnia or

disrupted sleep patterns. I was extremely busy and active up until a

couple of weeks before I was diagnosed. My symptoms that eventually put me

in the hospital were so vague and hard to diagnose, I really didn't

suspect a serious condition developing.

I think that I may have had AIH for as long as 20 years, too. Seemingly

unrelated medical problems over the years apparently were most likely AIH

symptoms. They included sudden joint pain and swelling that would be

severe enough to immobilize me, yet that would spontaneously disappear

without treatment, skin rashes that also couldn't be diagnosed but that

just went *poof* and disappeared in the night, and other things. I don't

see how any doctor could have suspected liver disease. It would have been

nice if one of them had at least tested for it, though.

Through this group, many of us have been able to identify and confront

what's going on with us. Too few doctors seem willing or even able to

offer comprehensive and sympathetic explanations. It's much less fearsome

to battle something you can identify than to fight against an unknown enemy!

Take care,

Geri

[Guest guest]

Hi Joan,

I think that your attitude is great. If things are working for you, that's

what matters most.

A funny thing about the liver spots. I noticed them developing on the

backs of my hands a few years ago. It really bothered me because I'm

fairly pale so they stood out. Then I got sick, was diagnosed with AIH,

started taking Prednisone and Imuran and got all of the unpleasant side

effects. But!!! The liver spots disappeared. I couldn't believe it

because just a couple of years ago I asked a woman Dermatologist (about 20

years younger than me) about them and she condescendingly gave me a little

lecture about age, women and liver spots. To placate me a little, she used

a painful dry ice treatment on the worst of them (didn't change a thing)

and sent me on my way. I'd like to see her now so she could see the nice,

clear backs of my hands.

Prednisone and Imuran saved my life. The extra 40 lbs. I carry around,

mostly in my mid-section, are worth it. I was very sick for a few months

then gradually got better. Now I'm in remission. I'm down to 5 mgs. of

Prednisone and according to my doctor, the weight will disappear in time,

if I can continue to taper down. So far, no sign of bone density loss,

glaucoma or diabetes (though my glucose and cholesterol are usually

slightly elevated these days). Those are my biggest fears about pred side

effects. Cancer from Imuran? Well, the odds are on my side. Without it,

I wouldn't have survived for two years if that long. Now, I might have a

10% chance of developing cancer sometime before I'm 80, if I don't get run

over by a bus first.

My husband, by the way, is fortunately not sick, though in the past 3 years

he's had two back surgeries, removal of one lung (lung cancer) and two

heart attacks or maybe just one - they aren't sure what really happened the

last time. He gets around, with pain, and just barely, so I pick up the

slack for him besides carrying my own load. We compensate for our new

limitations. I spend to many hours at the computer trying to get it to do

magic acts and he builds ship models. We both go through a mountain of

books and magazines every week and we go out to dinner much too often. We

won't be running any marathons or doing any mountain climbing soon, but who

needs them anyhow?

Each of us has to make our own decisions about how we will deal with this

very scary disease. I hope that you continue to feel mostly well and that

the important factors stay under control for you. Lucky you, to get that

time away now and then!

Take care,

Geri

PS: Is your doctor a Hepatologist? That's very important. The fact that

you're retaining fluid and itching could be signs that your disease may be

progressing more than you realize. I went through all that and learned

almost too late that my gallbladder and bile ducts had stopped functioning.

When I finally ended up in the hospital, they found Stage IV cirrhosis and

Grade 3-4 inflammation. I did not have jaundice, by the way, but my feet,

ankles and abdomen were so swollen that I looked like I'd been pumped full

of water. When your abdomen swells from liver disease, it's often ascites

and that has some very dangerous potential.

[Guest guest]

Hi ,

I've been taking Prednisone and Imuran for a year and a half and I've had

ups and downs with hair loss. Just got over a recent bout of wondering if

I would lose it all. Now, things are back to normal. I never did have one

of those thick heads of hair some people are blessed with so I had little

to spare, in my opinion.

Since this all started I've had beauticians warn me that I risked total

baldness if I were to have a perm or tint my hair. So, I went without both

for awhile, looked lousy, and the hair kept falling until it had done it's

thing. I found another more realistic stylist. She pointed out that we

all go through hair loss cycles and that we also tend to shed a little in

warm and hot weather. She gives me both perms and tints, but she's careful

about the products she uses. I'm actually getting more compliments on my

hair than I have in years!

I suspect that at least some of the hair loss is caused by the liver

disease itself. But, whatever happens, take heart. The hair loss will not

be permanent. I've had enough bad haircuts over the years to have become

assured by the knowledge that no matter what, sooner or later it grows

back (unless you're a man or have a unique condition not related to AIH or

pred or any of that.)

Take care,

Geri

[Guest guest]

:

It is so wierd that you would write about the tingling in your head and legs

because I was just telling my husband over the weekend that I did not know how

to

describe the strange sensation in my head. I told him the closest I could come

to explaining is that I have chills in my head because it's a little more

intense

than tingling.

I get the tingling in my legs a lot at nighttime and it is so uncomfortable I

can't sleep. What do you do about it?

Kaye - AIH - Ohio

S9457@... wrote:

> From: S9457@...

>

> Roxanne,

>

> Thank you for your kindness. My kids are the loves of my life. I consider

> them my biggest accomplishments. I'm trying to calm down, but you know how it

> is, it isn't always easy. I have probably cried a million tears by now. I

> appreciate all the support that I have been receiving. Just wondering, I

> have a tingling sensation on my scalp, and sometimes in the lower part of my

> legs. Have you ever heard of such a thing? My kids spend every other weekend

> with their Dad, so this weekend I;m going to get some much needed R & R.

> I was diagnosed in Sep of 98 and put on Pred in November. They tried to wean

> me down to 7.5mgs but my levels tripled. Hopefully the Imuran will get me off

> the Prednisone. The side effects are very difficult to deal with.

>

> I hope you feeling well, talk to you soon!

>

>

>

> ---------------------------

[Guest guest]

Hi Kaye,

I'm not sure why I get the tingling in my head and legs. I have a call out to

my Dr. but I haven't heard from her yet. I'll let you know what she says. It

didn't start until I went on the Imuran. I'm just hoping that I don't lose

all my hair. It's hard enough with the weight gain.

Thanks

[Guest guest]

,

Everyone is different, but I didn't notice hair loss for several months

after I'd started taking Prednisone and Imuran. However, I did develop a

" hairy " jawline after just a couple of months. It happened at the same

time I developed a moon face and hump on the back of my neck. The hair

disappeared as quickly as it appeared and the moon face didn't last that

long either.

If there's a plus in any of this, it's that most of the physical side

effects are temporary, at least for most of us.

Take care,

Geri

[Guest guest]

>From: S9457@...

>Reply- onelist

> onelist

>Subject: Re: [ ] Concerned

>Date: Fri, 25 Jun 1999 17:31:38 EDT

>MIME-Version: 1.0

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>X-Mailer: AOL 4.0 for Windows 95 sub 214

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>

>From: S9457@...

>

>Roxanne,

>

>Thank you for your kindness. My kids are the loves of my life. I consider

>them my biggest accomplishments. I'm trying to calm down, but you know how

>it

>is, it isn't always easy. I have probably cried a million tears by now. I

>appreciate all the support that I have been receiving. Just wondering, I

>have a tingling sensation on my scalp, and sometimes in the lower part of

>my

>legs. Have you ever heard of such a thing? My kids spend every other

>weekend

>with their Dad, so this weekend I;m going to get some much needed R & R.

>I was diagnosed in Sep of 98 and put on Pred in November. They tried to

>wean

>me down to 7.5mgs but my levels tripled. Hopefully the Imuran will get me

>off

>the Prednisone. The side effects are very difficult to deal with.

>

>I hope you feeling well, talk to you soon!

>

>

Hi

What are the side effects of Imuran?

>

>---------------------------

[Guest guest]

,

I've only been on Imuran for three weeks. My major concern was that I noticed

my hairline was getting very thin. My local liver specialist said that it may

get thin, but he doubted that I would go bald. My Specialist in Pennsylvania

wants me to have thyroid tests done and a hair analysis. I not sure of all

the side effects yet, I know the group can tell you more. My arms are tight

and stiff when I reach upwards. Does this sound familiar to anyone?

Hope all is well with you.

NJ-AIH

p.s. is Rochester in NY?

[Guest guest]

>From: Roselle50@...

>Reply- onelist

> onelist

>Subject: Re: [ ] Concerned

>Date: Thu, 8 Jul 1999 23:49:35 EDT

>MIME-Version: 1.0

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>20:50:05 1999

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> -owneronelist

>Delivered-mailing list onelist

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>

>From: Roselle50@...

>

>:

>

>The tingling in the head is something that drives me nuts. Also I get numb

>from the back down my legs. Had tests at the Mayo and nothing shows up.

>

>Sue AIH

>Wisconsin

Sue,

Have you been checked for MS or sciatica or diabetes?

>

>---------------------------

[Guest guest]

Hi,

I am little confused about how this list works...but here goes. I took

Imuran for almost 10 years, starting in 1985. I lost hair. It was not a

permanent loss. It did grow back quite nicely once I was well into the

therapy.

[Guest guest]

:

The tingling in the head is something that drives me nuts. Also I get numb

from the back down my legs. Had tests at the Mayo and nothing shows up.

Sue AIH

Wisconsin

[Guest guest]

:

No, is that a sign? If so I will have it checked out,

Sue AIH

Wisconsin

[Guest guest]

,

How far into therapy did your hair grow back, after you stopped the Imuran or

before?

[Guest guest]

Sue,

Thanks, my doctor thinks it's a side effect from the Imuran. It started about

a week after I started the Imuran, now it comes and goes.

[Guest guest]

Hi , I am having to stretch back into my memory for this one, but I

believe that it began growing back after about the third or fourth month. By

the time I had been on Imuran for a year my hair was fine. However, when I

went off the Imuran, my hair fell out again. (Not bald mind you- just thin).

Also, every time my prednisone gets increased my hair falls out after about

2 weeks. I am just now growing hair back from a flare in the winter of 1997.

[Guest guest]

,

I know that I'm dwelling on this hair thing, but believe me, I have so many

things going on that I was just hoping that one obvious thing (my hair)

wouldn't fall out. Besides the AIH. I'm hearing impaired (high frequency

loss), have some sort of vertigo thing going on, acid reflux, weight gain

(thanks to Pred)... but on the upside I have two of the most beautiful

children in the world. I have been blessed (twice). And I want to do

everything in my power to be around for them for a long long time.

I hope your having a great day.

Please let's all try to make the convention happen, I'd be thrilled to meet

all my new found friends.

AIH-NJ

[Guest guest]

Hey , you certainly don't need to justify your feelings about your hair!

Believe me, I was really upset this last time when it started falling out in

hunks from the high doses of prednisone. I was so bloated I couldn't get my

clothes zipped up, buttoned or even on in some cases. I looked horrible and

my intestinal tract was totally ripped up. Then my hair started coming out.

I wound up with the typical male pattern baldness thing. I wound up cutting

my hair short so that it looked better. Fortunately, it does grow back.

And, the Imuran did not cause as much hair loss as the high steroid doses.

Maybe things will be that way for you. I too, am lucky to have my daughter.

She is just 17 months old and is the greatest thing. I want to be around

too.....but I would say that it would be nicer with hair than without if

possible! I am just trying to lighten up a little. I had a pretty

depressing couple of days here and am just getting out of it. Take care,

[Guest guest]

I personally would not dump him because if you love this man, as you stated

you wanted to spend the rest of your lives together, how could you ever find

another man to make you as happy as this man does? I think with love between

2 people anything can be overcomed................GOOD LUCK!!!! Hold on to

him!

Tammy

Have a Happy Day!

[Guest guest]

it is a very hard call. I don't remember how old you are or if we've

even met. I have had lots of male friends through LPA, but that's where it

sort of had to end with me, just friendship. I knew I'd never be able to

take care of someone, who had just as many muscle or bone problems as I

have. I'm slowly being crippled by what I have. I'm 38 and finally met

someone I fell in love with almost insantly too. He is not small like us

though. I know he'll be able to take care of me

Judi

At 01:31 PM 9/11/00 -0000, wrote:

>

>I have Spina Bifida and my boyfriend has SED. From the first moment

>we met we knew we wanted to spend the rest of our lives together.

>However lately we have been having problems. Most of these problems

>we can work on. There is one major concern that is tearing me apart

>however. He is quite a bit shorter than I am and I am confined to a

>wheelchair. I'm worried that he wouldn't be able to help me if

>we got married when I needed help. A few people have brought this to

>my attention but I was to stubborn to want to listen. Now I'm really

>worried. Do I make a clean break with him or stick with him. I have

>told him I'm worried and he thinks he has failed me because he isn't

>a big strong man.

>

>

>

>

>

>

[Guest guest]

,

Hold on to that Man! He loves you or he wouldnt care whether he could

physically help you or not. You can get help other ways but to have someone

emotionally Love you is where it's at dear! You just put your minds together

and figure out ways to get around and do.

Anne

[Guest guest]

Where there's a will, there's a way. Plus you could always get an attendant

come in from Home Health, so many days a week. Plus it's amazing what one

can find out how much they can really do for themselves, if they are left to

fend for themselves. Independence is a great investment. Without sounding

like I'm bragging, I am living proof of that.

Good luck you guys and just remember that time is always on your side, so

careful planning is so important in all of this. If it's meant to be, then

all the other problems will sort themselves out.

Ann

Re: Concerned

> ,

>

>

> Hold on to that Man! He loves you or he wouldnt care whether he could

> physically help you or not. You can get help other ways but to have

someone

> emotionally Love you is where it's at dear! You just put your minds

together

> and figure out ways to get around and do.

>

> Anne

>

>

>

[Guest guest]

hello my name is edna and let me tell you that this vaccine from all the

research i have is dangerous stuff. my son just refused it and was given an

article 15. he was demoted from spec. to pvt. given 45 days restriction and

45 days extra duty as well as loss of half a months pay for 2 months. his

military career might be over but the battle has just begun. i will at least

have my son alive and well. please consider carefully before you or yours

takes this vaccine, just what it may end up costing you and yours. this site

and the people are very helpful and informative. welcome aboard and good

luck. your new friend edna

>From: unite@...

>Reply-egroups

>egroups

>Subject: concerned

>Date: Fri, 22 Sep 2000 14:47:58 -0000

>

>List,

>

>I am a newbie to the sight who had left a message the other day

>requesting any info on the safety of the vaccine. Has anyone had the

>chance to look at it? Also, I just saw that a soldier down at Fort

>Hood is being Court Martialed soon for refusing. From what I read,

>it said that he became sick after taking it. Is he alright now?

>What has happened to him since he refused?

>

_________________________________________________________________________

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[Guest guest]

I would suggest you visit MAJ Bates webiste, where it has

many illnesses detaied out. Note that it does NOT have all of them, just a

few. Mainly from his unit. Imagine this kind of magnitude going on in all

units Pretty frickin' scary, huh? There are MANY places you can go to

start looking, but, start with this one. This will help you understand that

people are not full os sh**, and that there's much more that meets the eye.

----Original Message Follows----

From: unite@...

Reply-egroups

egroups

Subject: concerned

Date: Fri, 22 Sep 2000 14:47:58 -0000

List,

I am a newbie to the sight who had left a message the other day

requesting any info on the safety of the vaccine. Has anyone had the

chance to look at it? Also, I just saw that a soldier down at Fort

Hood is being Court Martialed soon for refusing. From what I read,

it said that he became sick after taking it. Is he alright now?

What has happened to him since he refused?

_________________________________________________________________________