Re: Questions - Hair loss, More Questions

[Guest guest]

>From: Geri Spang <spangs@...>

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>Subject: Re: [ ] Questions - Hair loss, More Questions

>Date: Thu, 01 Jul 1999 04:23:13 -0700

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Geri,

How can one tell if it is just a big belly, or ascites?

Thanks,

/shireen

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>From: Geri Spang <spangs@...>

>

>Elena,

>I had severe fluid retention for several weeks before I was diagnosed with

>AIH. I think that it's brought on by a poorly functioning (inflamed or

>cirrhotic) liver. Actually, I believe that I'd had ascites for a long time

>before my feet and ankles began swelling and before I had a clue that I

>might have a real medical problem. A low salt diet can help control fluid

>retention, however, and is strongly recommended by most doctors. Mine

>didn't really emphasize it to me. Instead, they just suggested I cut back

>on salt when I complained about edema. I notice in my medical records from

>Scripps that they referred to me as " slim " . Ha! ly, I was NOT slim

>when I first saw them even though I'd just started on Prednisone. I'd like

>to ask them, " compared to what? " I was the heaviest I've ever been and

>most of it was due to fluid retention.

>

>Take care,

>Geri

>

>

>

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

[Guest guest]

>From: Roselle50@...

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>Subject: Re: [ ] Questions - Hair loss, More Questions

>Date: Thu, 1 Jul 1999 14:01:17 EDT

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Hi,

Can't seem to find hepatologist in my area. My internist has subspecialty

in GI, is that good enough?

/Shireen

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>From: Roselle50@...

>

>Geri:

>

>

>Was at the doctors this morning. White count was down to 11,800 and diff

>was

>89.

>

>The doctor I saw was at least 100 years old and backed up when I told him I

>had AIH so I had to explain it to him.

>

>He will be calling this afternoon. He thinks I have Pancreatitis. I will

>be

>putting a call into Dr. Czaja. My doctor here took off Friday and he has

>Thursdays off anyway so he could have a long weekend. He deserves it but I

>will tell him I got sick. Will tease him about it.

>

>Oh by the way, the doctor told me that I was fat. I told he didn't have to

>point that out because of my illness. I know he had no clue about what I

>have and no clue what to do.

>

>Sue AIH

>Wisconsin

>

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

[Guest guest]

Geri:

Was at the doctors this morning. White count was down to 11,800 and diff was

89.

The doctor I saw was at least 100 years old and backed up when I told him I

had AIH so I had to explain it to him.

He will be calling this afternoon. He thinks I have Pancreatitis. I will be

putting a call into Dr. Czaja. My doctor here took off Friday and he has

Thursdays off anyway so he could have a long weekend. He deserves it but I

will tell him I got sick. Will tease him about it.

Oh by the way, the doctor told me that I was fat. I told he didn't have to

point that out because of my illness. I know he had no clue about what I

have and no clue what to do.

Sue AIH

Wisconsin

[Guest guest]

,

I've seen reference (in my medical records) to a " wave " that doctors feel

or see when they compress the abdomen. I guess it means that if your

stomach isn't simply solid as it would be from weight gain but instead it

kind of sloshes or moves around, it's ascites. Not a very medical way of

explaining it, but I think that's what they look for.

Take care,

Geri

[Guest guest]

Kaye,

Have you been checked for glaucoma? It's a possible side effect of

Prednisone. I haven't been checked for two years and I feel really remiss

about it but I'm not having vision problems. It's probably a good idea to

have your eyes checked at least once a year.

This past week I've learned that I've had considerable bone loss because of

Prednisone and that I now have early osteoporosis and my doctor has told me

that I'll have to take Prednisone for the rest of my life. The good news,

though, is that I will stay on a low dose of 5 mgs. I can live with that.

I don't resent having to continue taking Prednisone at all. I shiver when

I think of where I'd be now if I hadn't taken it and Imuran.

I have a little office and there's a TV/VCR combo on top of a tall file

cabinet. I do computer maintenance (right now I'm backing up some

important files to a remote computer, as I write) and I watch news shows

I've taped while I write e-mail. That way I feel productive and my day

amounts to more than housework or feeling gujilty for not doing all the

things I want to do.

Take care,

Geri

[Guest guest]

Sue,

I've taken diuretics from the start and haven't had any problems. Right

now I'm taking a fairly large amount of them. Probably the reason your

doctor doesn't want you to continue taking them is because they can

possibly cause kidney damage. However, there is a milder diuretic called

Ameloride (it's a potassium sparing diuretic). You might ask your doctor

if he would consider that okay. It worked for me for a long time but a few

months ago I had to add lasix to the drugs I'm taking.

Take care,

Geri

[Guest guest]

Geri:

I was last tested for glaucoma a couple of years ago. I am glad you mentioned

it...I probably should go for a check up. The eye doctor told me I should come

back every year but you know how that goes...can't keep up with all the doctors

who want to see me periodically.

I was wondering if anyone in the group has sensitivity to heat? I used to

play softball in 90 degree weather, mow the yard or ride my bike in the middle

of the day, etc. I froze my entire family out all winter because I kept

turning the heat off and now that we have 90-95 degree weather, I am

miserable. Does anyone else have this problem? Is it because I've gained so

much weight that I have more insulation?

Any response would be appreciated.

Kaye - AIH - Ohio

Geri Spang wrote:

> From: Geri Spang <spangs@...>

>

> Kaye,

> Have you been checked for glaucoma? It's a possible side effect of

> Prednisone. I haven't been checked for two years and I feel really remiss

> about it but I'm not having vision problems. It's probably a good idea to

> have your eyes checked at least once a year.

>

> This past week I've learned that I've had considerable bone loss because of

> Prednisone and that I now have early osteoporosis and my doctor has told me

> that I'll have to take Prednisone for the rest of my life. The good news,

> though, is that I will stay on a low dose of 5 mgs. I can live with that.

> I don't resent having to continue taking Prednisone at all. I shiver when

> I think of where I'd be now if I hadn't taken it and Imuran.

>

> I have a little office and there's a TV/VCR combo on top of a tall file

> cabinet. I do computer maintenance (right now I'm backing up some

> important files to a remote computer, as I write) and I watch news shows

> I've taped while I write e-mail. That way I feel productive and my day

> amounts to more than housework or feeling gujilty for not doing all the

> things I want to do.

>

> Take care,

> Geri

>

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

[Guest guest]

KAYE:

I USE TO FREEZE ALL THE TIME AND NOW I AM ALWAYS TURNING THE HEAT IN THE

WINTER AND SUMMER I HAVE ALL WINDOWS OPEN. THE AIR CONDITIONER IN ARE CAR

WAS BROKE SO I MADE MY HUSBAND FIX IT. THE TRUCK HAS IT TOO. MY DAUGHTER

WEARS A SWEATSHIRT IN THE CAR.

HEAT IS A BIG FACTOR.... I USED TO HAVE A HEATER IN MY OFFICE NOW I HAVE A

FAN RUNNING YEARROUND.

SUE AIH

WISCONSIN

[Guest guest]

Kaye,

I've put off having an eye exam for awhile and I'm long overdue for a

glaucoma test. I need to find someone locally who isn't going to try to

sell me expensive glasses when all I want to know is whether or not my eyes

are healthy. We have limited medical resources in Las Vegas, which is

frustrating.

There have been several people in this group who have mentioned fluid build

up in their eyes and I am guessing that the longer we take steroids, the

greater the possibility that we could be developing a problem. Dumb me - I

used to have my eyes examined at least once a year though I had no problems

and now that there is a risk factor, I never get around to it.

About heat sensitivity, I've had a problem with heat for many years. It

doesn't take much heat exposure for me to turn pale plum colored and to

feel nauseated and light headed. Almost 20 years ago I also developed a

sun sensitivity so that I would develop a fine, nearly invisible rash

everywhere I was exposed to the sun. I was told that it was an allergy to

my own perspiration and in fact, hot showers would cause the same reaction.

Yesterday it was over 110º here and it got up to 116º in the direct sun. I

had to do some shopping and despite AC, it takes awhile for it to kick in

when you've been out of the car for awhile. I was sick for several hours

after I got home from the store. I simply can't tolerate heat at all

anymore. Also, I'm getting that rash back for the first time in more than

a year. Probably because of reduced Prednisone. I used to take a very

mild dosage of Hydroxyzine, just once a day, and I could avoid the rash.

However, it has phenobarbitol in it and since the onset of AIH I can't

tolerate that drug at all. It totally knocks me out. I don't think that

added weight is causing the problem (for you or for me or any of us). I

had the problem just as badly when I weighed 115 lbs. as I do now at 155 lbs.

Take care,

Geri

[Guest guest]

>From: Kaye Gillis <kgillis@...>

>Reply- onelist

> onelist

>Subject: Re: [ ] Questions - Hair loss, More Questions

>Date: Tue, 06 Jul 1999 13:39:22 -0400

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>From: Kaye Gillis <kgillis@...>

>

>Geri:

>

>I was last tested for glaucoma a couple of years ago. I am glad you

>mentioned

>it...I probably should go for a check up. The eye doctor told me I should

>come

>back every year but you know how that goes...can't keep up with all the

>doctors

>who want to see me periodically.

>

>I was wondering if anyone in the group has sensitivity to heat? I used to

>play softball in 90 degree weather, mow the yard or ride my bike in the

>middle

>of the day, etc. I froze my entire family out all winter because I kept

>turning the heat off and now that we have 90-95 degree weather, I am

>miserable. Does anyone else have this problem? Is it because I've gained

>so

>much weight that I have more insulation?

>

>Any response would be appreciated.

>

>Kaye - AIH - Ohio

>

>Geri Spang wrote:

>

> > From: Geri Spang <spangs@...>

> >

> > Kaye,

> > Have you been checked for glaucoma? It's a possible side effect of

> > Prednisone. I haven't been checked for two years and I feel really

>remiss

> > about it but I'm not having vision problems. It's probably a good idea

>to

> > have your eyes checked at least once a year.

> >

> > This past week I've learned that I've had considerable bone loss because

>of

> > Prednisone and that I now have early osteoporosis and my doctor has told

>me

> > that I'll have to take Prednisone for the rest of my life. The good

>news,

> > though, is that I will stay on a low dose of 5 mgs. I can live with

>that.

> > I don't resent having to continue taking Prednisone at all. I shiver

>when

> > I think of where I'd be now if I hadn't taken it and Imuran.

> >

> > I have a little office and there's a TV/VCR combo on top of a tall file

> > cabinet. I do computer maintenance (right now I'm backing up some

> > important files to a remote computer, as I write) and I watch news shows

> > I've taped while I write e-mail. That way I feel productive and my day

> > amounts to more than housework or feeling gujilty for not doing all the

> > things I want to do.

> >

> > Take care,

> > Geri

> >

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

[Guest guest]

>From: Geri Spang <spangs@...>

>Reply- onelist

> onelist

>Subject: Re: [ ] Questions - Hair loss, More Questions

>Date: Tue, 06 Jul 1999 13:19:40 -0700

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>From: Geri Spang <spangs@...>

>

>Kaye,

>I've put off having an eye exam for awhile and I'm long overdue for a

>glaucoma test. I need to find someone locally who isn't going to try to

>sell me expensive glasses when all I want to know is whether or not my eyes

>are healthy. We have limited medical resources in Las Vegas, which is

>frustrating.

>

>There have been several people in this group who have mentioned fluid build

>up in their eyes and I am guessing that the longer we take steroids, the

>greater the possibility that we could be developing a problem. Dumb me - I

>used to have my eyes examined at least once a year though I had no problems

>and now that there is a risk factor, I never get around to it.

>

>About heat sensitivity, I've had a problem with heat for many years. It

>doesn't take much heat exposure for me to turn pale plum colored and to

>feel nauseated and light headed. Almost 20 years ago I also developed a

>sun sensitivity so that I would develop a fine, nearly invisible rash

>everywhere I was exposed to the sun. I was told that it was an allergy to

>my own perspiration and in fact, hot showers would cause the same reaction.

>

>Yesterday it was over 110º here and it got up to 116º in the direct sun. I

>had to do some shopping and despite AC, it takes awhile for it to kick in

>when you've been out of the car for awhile. I was sick for several hours

>after I got home from the store. I simply can't tolerate heat at all

>anymore. Also, I'm getting that rash back for the first time in more than

>a year. Probably because of reduced Prednisone. I used to take a very

>mild dosage of Hydroxyzine, just once a day, and I could avoid the rash.

>However, it has phenobarbitol in it and since the onset of AIH I can't

>tolerate that drug at all. It totally knocks me out. I don't think that

>added weight is causing the problem (for you or for me or any of us). I

>had the problem just as badly when I weighed 115 lbs. as I do now at 155

>lbs.

>Take care,

>Geri

>

>Geri,

Do you have a special kind of hydroxyzine? Mine does not have phenobarbital

in it. It is an antihistamine with sleepiness as a side effect.

>

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

[Guest guest]

>From: Geri Spang <spangs@...>

>Reply- onelist

> onelist

>Subject: Re: [ ] Questions - Hair loss, More Questions

>Date: Tue, 06 Jul 1999 23:53:50 -0700

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>From: Geri Spang <spangs@...>

>

>,

>Hydroxyzine is the generic name for what I used to take. When I told my

>doctor that it makes me sleepy, he told me that it's so mild that they give

>it to newborn babies and he couldn't see how it could cause drowsiness.

>Then, when it really knocked me out after I was most ill with AIH, one of

>the doctors said that it has phenobarbitol in it. I stopped taking it

>about a year and a half ago because of that, but maybe he was guessing?

>You take it too? Also for itching? It always kept the rashes and itching

>at bay so I really do miss taking it.

>Geri

>

>Geri,

I used to take hydroxyzine/vistaril for sleep, but it stopped working.

I take benedry when the itching gets intolerable. Externally Lanacaine

maxium strength works well.

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

[Guest guest]

,

Hydroxyzine is the generic name for what I used to take. When I told my

doctor that it makes me sleepy, he told me that it's so mild that they give

it to newborn babies and he couldn't see how it could cause drowsiness.

Then, when it really knocked me out after I was most ill with AIH, one of

the doctors said that it has phenobarbitol in it. I stopped taking it

about a year and a half ago because of that, but maybe he was guessing?

You take it too? Also for itching? It always kept the rashes and itching

at bay so I really do miss taking it.

Geri

[Guest guest]

Geri:

Boy I remember the itch and when I got sick again this time I started having

the itch again. Boy, my family thought I was nuts. I would use the wall to

itch my back because that is where it was the most.

Sue AIH

Wisconsin

[Guest guest]

Sue:

I can relate - I usually wear short sleeves to work in the middle of winter!

And a sweatshirt instead of a coat! I would so much rather be cold! You can

keep adding clothes until you get warm but there's only so much you can take

off! (And only so much that people want you to take off after you've been

swallowing prednisone for a few years!!)

Kaye AIH - OHIO

Roselle50@... wrote:

> From: Roselle50@...

>

> KAYE:

>

> I USE TO FREEZE ALL THE TIME AND NOW I AM ALWAYS TURNING THE HEAT IN THE

> WINTER AND SUMMER I HAVE ALL WINDOWS OPEN. THE AIR CONDITIONER IN ARE CAR

> WAS BROKE SO I MADE MY HUSBAND FIX IT. THE TRUCK HAS IT TOO. MY DAUGHTER

> WEARS A SWEATSHIRT IN THE CAR.

>

> HEAT IS A BIG FACTOR.... I USED TO HAVE A HEATER IN MY OFFICE NOW I HAVE A

> FAN RUNNING YEARROUND.

>

> SUE AIH

> WISCONSIN

>

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

[Guest guest]

Kaye,

I go through " spurts " of hot and cold. My DR said the predisone plays havoc

with hormones and I should go to an OB/GYN to have it checked out. He has

one patient that has liver problems who is in her early thirties and is

already going through menopause. Medications can't live with em but can't

live without em. Ha!

Anita G.

[Guest guest]

,

I still have a bottle of Hydroxyzine left from before my AIH diagnosis. If

I start to have insomnia again, I might give it a try. Does your doctor

say it's okay with liver disease? I see that there are several different

forms of the drug. I took a tiny little pill, kind of diamond shaped, as I

recall.

Geri

[Guest guest]

>From: Geri Spang <spangs@...>

>Reply- onelist

> onelist

>Subject: Re: [ ] Questions - Hair loss, More Questions

>Date: Fri, 09 Jul 1999 03:53:23 -0700

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>From: Geri Spang <spangs@...>

>

>,

>I still have a bottle of Hydroxyzine left from before my AIH diagnosis. If

>I start to have insomnia again, I might give it a try. Does your doctor

>say it's okay with liver disease? I see that there are several different

>forms of the drug. I took a tiny little pill, kind of diamond shaped, as I

>recall.

>Geri

>

>

Geri,

I took a two tone green capsule. Did not know there are several types.

Maybe you have one with barbituate in it. I see no contraindication with

liver disease in my meds book.

Maybe you should call pharmacist and see what is in yours.

PS: I am not taking it these days. I took it for sleep and it stopped

working.

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

[Guest guest]

,

Talk about a late answer (nine days!). Yes, a negative mammogram was very

good news. All of my aunts who had breast cancer were detected through

mammogram, which is amazing. And, every one of them did well after having

a lumpectomy. It's great to have some good news for a change.

Are you still doing well? I'm beginning to lose track of how everyone is

doing and I hate that. Maybe it's a good thing in a way, though. I find

myself worrying about people when they're having exceptional problems.

Better to worry about someone else than myself, though. I think it's great

that my labs stay normal time after time except for the same old

elevations, which only confirm what I already know - that I have a lousy liver.

I'd gladly share my zoobies with anyone who wants them. Well, almost

anyone. If you're blessed with small ones, at least you can complement

your profile. When they're too big, nothing fits right and in time gravity

will become your worst enemy. Also, I read that it's difficult to

diagnose breast cancer in women with large, dense breasts. But, when I was

your age, I didn't complain. At my age, I don't want to be bothered.

How fast are you weaning off the pred? I hope it goes well for you. My

doctor escalated the weaning process too much. I went down in increments

of 5 mgs. every 2 weeks until I got down to 10 mgs. I still felt okay at

10 mgs., except that I developed horrendous giant hives overnight and had

to have a biopsy to be sure some other wierd thing wasn't going on. The

Dermatologist wanted to put me back up to 30 mgs. to get rid of the hives

but my Hepatologist said " no way " and instead elevated me to 15 mgs., then

told me to start reducing at 1 mg. per week. Every week after I started

decreasing, the bone and muscle pain got worse until I could hardly walk.

Not pleasant. Finally, I saw a Rheumatologist and she put me back on 10

mgs. of pred. After that, I tried to reduce at the rate of about 1/2 mg.

per week but that was miserable.

Now I'm at 5 mgs. and just found out from the Hepatologist who supposedly

is calling the shots to the Hep doctor I see in LV that I'm not to reduce

below 5 mgs EVER!!! I can live with that, and on the plus side, the

muscle and joint pain seems to be decreasing now. On the negative side, I

haven't lost any weight yet, though I don't have a round face or puffy neck

and haven't for months. I think that 5 mgs. is considered to be a

relatively safe level to avoid negative side effects, since it is lower

than the body's natural level.

Take care,

Geri

[Guest guest]

Kaye,

I too suffer from the heat. I have asked my doctors about it and a couple

of them say it is because of the weight gain from the pred. I am not

convinced. I believe it has a lot to do with either the meds or the disease

itself. I have never had such a problem with my body temp. It is so far out

of wack now, my family can't believe I can walk around in a t'shirt when

they have coats and blankets wrapt around them. I have to sleep in an

air-conditioned room or I sweat like a horse. Nice to hear that someone

else has this, now I know I am not alone.

SueB.

----------

> From: Kaye Gillis <kgillis@...>

> onelist

> Subject: Re: [ ] Questions - Hair loss, More Questions

> Date: Wednesday, 7 July 1999 3:39

>

> From: Kaye Gillis <kgillis@...>

>

> Geri:

>

> I was last tested for glaucoma a couple of years ago. I am glad you

mentioned

> it...I probably should go for a check up. The eye doctor told me I

should come

> back every year but you know how that goes...can't keep up with all the

doctors

> who want to see me periodically.

>

> I was wondering if anyone in the group has sensitivity to heat? I used

to

> play softball in 90 degree weather, mow the yard or ride my bike in the

middle

> of the day, etc. I froze my entire family out all winter because I kept

> turning the heat off and now that we have 90-95 degree weather, I am

> miserable. Does anyone else have this problem? Is it because I've

gained so

> much weight that I have more insulation?

>

> Any response would be appreciated.

>

> Kaye - AIH - Ohio

>

> Geri Spang wrote:

>

> > From: Geri Spang <spangs@...>

> >

> > Kaye,

> > Have you been checked for glaucoma? It's a possible side effect of

> > Prednisone. I haven't been checked for two years and I feel really

remiss

> > about it but I'm not having vision problems. It's probably a good idea

to

> > have your eyes checked at least once a year.

> >

> > This past week I've learned that I've had considerable bone loss

because of

> > Prednisone and that I now have early osteoporosis and my doctor has

told me

> > that I'll have to take Prednisone for the rest of my life. The good

news,

> > though, is that I will stay on a low dose of 5 mgs. I can live with

that.

> > I don't resent having to continue taking Prednisone at all. I shiver

when

> > I think of where I'd be now if I hadn't taken it and Imuran.

> >

> > I have a little office and there's a TV/VCR combo on top of a tall file

> > cabinet. I do computer maintenance (right now I'm backing up some

> > important files to a remote computer, as I write) and I watch news

shows

> > I've taped while I write e-mail. That way I feel productive and my day

> > amounts to more than housework or feeling gujilty for not doing all the

> > things I want to do.

> >

> > Take care,

> > Geri

> >

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

[Guest guest]

Kaye,

Now that is a good plan!

>From: Kaye Gillis <kgillis@...>

>Reply- onelist

> onelist

>Subject: Re: [ ] Questions - Hair loss, More Questions

>Date: Tue, 13 Jul 1999 12:42:14 -0400

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>

>From: Kaye Gillis <kgillis@...>

>

>

>Maybe if everyone in the group has the problem with heat intolerance, we

>should

>consider having our convention at the North Pole in the middle of January!

>

>Kaye

>

>

>milko wrote:

>

> > From: " milko " <milko@...>

> >

> > Kaye,

> > I too suffer from the heat. I have asked my doctors about it and a

>couple

> > of them say it is because of the weight gain from the pred. I am not

> > convinced. I believe it has a lot to do with either the meds or the

>disease

> > itself. I have never had such a problem with my body temp. It is so far

>out

> > of wack now, my family can't believe I can walk around in a t'shirt when

> > they have coats and blankets wrapt around them. I have to sleep in an

> > air-conditioned room or I sweat like a horse. Nice to hear that someone

> > else has this, now I know I am not alone.

> > SueB.

> >

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

> > > From: Kaye Gillis <kgillis@...>

> > > onelist

> > > Subject: Re: [ ] Questions - Hair loss, More Questions

> > > Date: Wednesday, 7 July 1999 3:39

> > >

> > > From: Kaye Gillis <kgillis@...>

> > >

> > > Geri:

> > >

> > > I was last tested for glaucoma a couple of years ago. I am glad you

> > mentioned

> > > it...I probably should go for a check up. The eye doctor told me I

> > should come

> > > back every year but you know how that goes...can't keep up with all

>the

> > doctors

> > > who want to see me periodically.

> > >

> > > I was wondering if anyone in the group has sensitivity to heat? I

>used

> > to

> > > play softball in 90 degree weather, mow the yard or ride my bike in

>the

> > middle

> > > of the day, etc. I froze my entire family out all winter because I

>kept

> > > turning the heat off and now that we have 90-95 degree weather, I am

> > > miserable. Does anyone else have this problem? Is it because I've

> > gained so

> > > much weight that I have more insulation?

> > >

> > > Any response would be appreciated.

> > >

> > > Kaye - AIH - Ohio

> > >

> > > Geri Spang wrote:

> > >

> > > > From: Geri Spang <spangs@...>

> > > >

> > > > Kaye,

> > > > Have you been checked for glaucoma? It's a possible side effect of

> > > > Prednisone. I haven't been checked for two years and I feel really

> > remiss

> > > > about it but I'm not having vision problems. It's probably a good

>idea

> > to

> > > > have your eyes checked at least once a year.

> > > >

> > > > This past week I've learned that I've had considerable bone loss

> > because of

> > > > Prednisone and that I now have early osteoporosis and my doctor has

> > told me

> > > > that I'll have to take Prednisone for the rest of my life. The good

> > news,

> > > > though, is that I will stay on a low dose of 5 mgs. I can live with

> > that.

> > > > I don't resent having to continue taking Prednisone at all. I

>shiver

> > when

> > > > I think of where I'd be now if I hadn't taken it and Imuran.

> > > >

> > > > I have a little office and there's a TV/VCR combo on top of a tall

>file

> > > > cabinet. I do computer maintenance (right now I'm backing up some

> > > > important files to a remote computer, as I write) and I watch news

> > shows

> > > > I've taped while I write e-mail. That way I feel productive and my

>day

> > > > amounts to more than housework or feeling gujilty for not doing all

>the

> > > > things I want to do.

> > > >

> > > > Take care,

> > > > Geri

> > > >

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

[Guest guest]

Maybe if everyone in the group has the problem with heat intolerance, we should

consider having our convention at the North Pole in the middle of January!

Kaye

milko wrote:

> From: " milko " <milko@...>

>

> Kaye,

> I too suffer from the heat. I have asked my doctors about it and a couple

> of them say it is because of the weight gain from the pred. I am not

> convinced. I believe it has a lot to do with either the meds or the disease

> itself. I have never had such a problem with my body temp. It is so far out

> of wack now, my family can't believe I can walk around in a t'shirt when

> they have coats and blankets wrapt around them. I have to sleep in an

> air-conditioned room or I sweat like a horse. Nice to hear that someone

> else has this, now I know I am not alone.

> SueB.

>

> ----------

> > From: Kaye Gillis <kgillis@...>

> > onelist

> > Subject: Re: [ ] Questions - Hair loss, More Questions

> > Date: Wednesday, 7 July 1999 3:39

> >

> > From: Kaye Gillis <kgillis@...>

> >

> > Geri:

> >

> > I was last tested for glaucoma a couple of years ago. I am glad you

> mentioned

> > it...I probably should go for a check up. The eye doctor told me I

> should come

> > back every year but you know how that goes...can't keep up with all the

> doctors

> > who want to see me periodically.

> >

> > I was wondering if anyone in the group has sensitivity to heat? I used

> to

> > play softball in 90 degree weather, mow the yard or ride my bike in the

> middle

> > of the day, etc. I froze my entire family out all winter because I kept

> > turning the heat off and now that we have 90-95 degree weather, I am

> > miserable. Does anyone else have this problem? Is it because I've

> gained so

> > much weight that I have more insulation?

> >

> > Any response would be appreciated.

> >

> > Kaye - AIH - Ohio

> >

> > Geri Spang wrote:

> >

> > > From: Geri Spang <spangs@...>

> > >

> > > Kaye,

> > > Have you been checked for glaucoma? It's a possible side effect of

> > > Prednisone. I haven't been checked for two years and I feel really

> remiss

> > > about it but I'm not having vision problems. It's probably a good idea

> to

> > > have your eyes checked at least once a year.

> > >

> > > This past week I've learned that I've had considerable bone loss

> because of

> > > Prednisone and that I now have early osteoporosis and my doctor has

> told me

> > > that I'll have to take Prednisone for the rest of my life. The good

> news,

> > > though, is that I will stay on a low dose of 5 mgs. I can live with

> that.

> > > I don't resent having to continue taking Prednisone at all. I shiver

> when

> > > I think of where I'd be now if I hadn't taken it and Imuran.

> > >

> > > I have a little office and there's a TV/VCR combo on top of a tall file

> > > cabinet. I do computer maintenance (right now I'm backing up some

> > > important files to a remote computer, as I write) and I watch news

> shows

> > > I've taped while I write e-mail. That way I feel productive and my day

> > > amounts to more than housework or feeling gujilty for not doing all the

> > > things I want to do.

> > >

> > > Take care,

> > > Geri

> > >

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

[Guest guest]

> Maybe if everyone in the group has the problem with heat intolerance, we

should

> consider having our convention at the North Pole in the middle of January!

Would it be too weird to make sure we get a " cold tub " instead of a hot

tub??

Don