Re: wt&hair

[Guest guest]

Leona,

I have my hair tinted and it definitely gives it body. The beautician who

does my hair is very careful about what products she uses and she doesn't

use a permanent tint on the ends because she said that would be too

damaging. Because I look so washed out most of the time, I've found that a

more intense color looks better on me instead of drawing attention to my

pal hndj.efwouseAt 10:34 PM 05/05/99 -0700, you wrote:

>From: nebaz@... (Leona )

>

>Thanks Geri for responding to my comments of our hair. So I know I'm not

>alone with baby fine hair that prednisone & azathioprine has not helped

>either. I have considered a rinse for body but with perms so often I

>felt I shouldnt add any more chemicals. Just another frustrating

>thing to add to the AIH list. I to have more clothes I cant wear than I

>can. Elastic waist slacks are not comfortable because I have no waist. I

>have been having a problem with my foot so have to wear shoes that

>orthotics fit in so I do not like dresses with those shoes. I have

>gained lbs & inches that I hope I can lose if I can stay off prednisone.

>Today is my 1st day w/o it, so will see what happens now. I am on 100

>azathioprine now. I have not been as uncomfortable the last few days but

>do feel stiff when I get up from sitting or out of bed. In response to

>others of sinus, I have had sinus infections several times. I usually

>start out thinking it is my eyes but eventually will be infection of the

>sinus. I too had shortness of breathe with hurting in left arm & chest

>but had stress test 2x & was required to go to the cardioligist before

>the 2nd liver biopsy & they find no problem. This started prior to being

>diagnosed with AIH, but I suppose was the cause. The discomfort is only

>with walking.

>I hope your remission lasts a long time, like forever. I am old enough

>that if I ever needed a transplant I probably couldnt have it so hope I

>never need it.

>I wish you all a better day tomorrow.

>

>Leona

>

>

>

>

>

>

>

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[Guest guest]

Leona,

The computer got away from me and sent a half finished message. Anyhow,

you might give color a try if you're having problems with too thin hair and

not much body. One nice thing about hair is that it almost always grows

back - and if it doesn't, it probably was a goner anyhow.

I wear elastic waist jeans and sweats (in the winter) and they're okay as

long as I buy a size that won't be too tight. They're also uncomfortable

for me, but I have to go out of the house once in awhile and I can't run

around in a nightgown all of the time, though I wouldn't mind.

When I was having problems with my feet swelling (they ache ALL of the

time) I searched for shoes that had a lot of " give " and I've discovered

that Aerosoles (sandles) are comfortable and usually attractive. For

awhile when I was low on potassium I had foot cramps but my doctor changed

my diuretics to Ameloride (potassium sparing) and the cramps finally

stopped. But not the aching and burning.

I've also had sinus problems almost from the first week I started taking

Prednisone and Imuran. It's not " normal " sinus and for more than a year, I

haven't had a day when I haven't had this heavy, thick nasal congestion.

I've mentioned it to my doctor and got no reaction so I decided that it's

probably not life threatening and I'll have to live with it. However, I

did read somewhere that the sinus cavities are somehow vulnerable to either

the meds or to some of the effects of AIH, so I think I'll do a little

searching to see if I can locate that information again. Seems like there

is the potential for serious problems.

I hope that going off Prednisone is successful for you. I keep trying to

go off the stuff but I'm not sure I'm going to be able to stop taking it.

The less I take, the more problems I have.

I'm sending a couple of files to the group that have some good general

information. They mention transplant eligibility briefly and they said

that generally a liver transplant isn't suggested for anyone over 70 years

old. So, if you're 70 or younger I think that you have a good argument to

be put on the transplant list. I do have my fingers crossed about staying

in remission but I feel like a clock is ticking.

Take care,

Geri

[Guest guest]

Dear Dorothy:

I noticed a strange thing with my hair and skin too. During the worst times

a lot of my hair fell out. But also, my skin and scalp became so dry that

they felt like sandpaper. You could see the coarse texture of my skin up

close. As someone who had always fought the oily's and had to wash my hair

every day, this was very strange for me. Even though my hair grew back, my

skin has remained really dry. You can still see a course texture to my face

(up close) and my hands are so dry that they are scaly on the back sometimes.

Even though I'm in 'remission' this has not changed. Has anyone else seen

increased dryness to the skin? Since I've been on the prednisone so long,

I've also noticed a thinning to the skin. It looks like parchment in places.

Glad to hear you're feeling good, Dorothy! I hope it continues for you!

Take care!

Kathy (AIH)

Seattle area

[Guest guest]

As for the hair---I have had a strange experience. Yes my hair did

fall out, but came back in VERY thick and for the first time in my life with

a natural curl to it. After almost a year with it like that it is starting

to fall out again. And guess what??? It is coming back in my natural

straight oily hair again. My hair dresser swears it is still very

thick!!!!!! I guess I can just tell more about it.

And the weight thing-----I have been down to 1mg of prednisone for a

long time. I personally feel I have gained more being on the lower doses of

prednisone than the higher. When they started me out on 40mg I couldn't sit

still long enough to eat. I have gained I guess approx. 45 pounds all

total. It isn't that bad since I am fairly tall. No-one believes I weigh

167 when I tell them (except my family). They are more disturbed by the

weight gain than I am. I am living life for the first time in a long time.

I must say that this group has given me so much confidence!!!!! There was a

time I thought I would kill myself if I ever weighed more than 140, but live

is more precious than weight, vanity or just about anything. Beauty is not

measured in pounds, but in genuine caring and patience and so much more.

Please forgive my tangent, but I just wanted to share what I am

feeling right now.

Dorothy

> [ ] wt & hair

>

> From: nebaz@... (Leona )

>

> Thanks Geri for responding to my comments of our hair. So I know I'm not

> alone with baby fine hair that prednisone & azathioprine has not helped

> either. I have considered a rinse for body but with perms so often I

> felt I shouldnt add any more chemicals.

[Guest guest]

Dorothy,

Those of us who have never really battled weight problems don't realize

that what we consider " too much " isn't all that exceptional. My

sister-in-law is Swedish, tall and big-boned, and she usually weighs very

close to 170 lbs. She is a beautiful woman and I would doubt anyone would

say she needs to lose weight. It's difficult for those of us who are more

used to being slim or even skinny. I started gaining weight back in the

70's but it wasn't fluid retention, it was too many good business lunches

and great dinners. Then, I dropped, for no apparent reason, I dropped from

140 lbs. down to 125 lbs. and stayed that way for several years. I hadn't

changed my eating habits, started exercising, nothing. However, around

1979 I began to have signs of fluid retention and I suspect that's when AIH

first started showing up. I had to have a ring that I'd worn for years

enlarged and I couldn't wear my wedding ring... it actually had cut into my

ring finger. Also, my feet were hurting all of the time and I thought I'd

developed a foot problem and started buying a larger size. Now, though, I

can wear that same ring that I quit wearing years ago and I am back to my

normal shoe size. This is a recent development that coincided with

increased diuretics. Now if I could only get rid of the ascites and the

puffiness in my upper legs (a new thing.)

I was just plain sick on the higher dosages of Prednisone. No problem with

too much energy. I was too weak to get out of bed most of the time. I

didn't start feeling almost human until I was down to 20 mgs. and I

continued to feel better until I was down to 10 mgs., then everything

started going wrong so I had to jump back up to 15 mgs. briefly. Though

pred contributes, I think it's only partly the culprit in this whole scenario.

I agree, beauty is not and should not be measured in pounds, but if it was,

most of us would be pageant winners! This is one of the most caring,

thoughtful group of people I've ever had the privelege to know. I wish we

didn't have the common bond that we have, but in a way, it's making most of

us stronger and perhaps better people.

Take care,

Geri

[Guest guest]

Geri

Your right in saying its a priveledge to be a part of this group. But

you missed one thing, Its a priveledge to have you in this group. You

always reply to posts which are informative and supporting, with many

kind words. I have only been on this list for a week, and i have

already realised that.

Elena

--- Geri Spang <spangs@...> wrote:

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

>

> Dorothy,

> Those of us who have never really battled weight

> problems don't realize

> that what we consider " too much " isn't all that

> exceptional. My

> sister-in-law is Swedish, tall and big-boned, and

> she usually weighs very

> close to 170 lbs. She is a beautiful woman and I

> would doubt anyone would

> say she needs to lose weight. It's difficult for

> those of us who are more

> used to being slim or even skinny. I started

> gaining weight back in the

> 70's but it wasn't fluid retention, it was too many

> good business lunches

> and great dinners. Then, I dropped, for no apparent

> reason, I dropped from

> 140 lbs. down to 125 lbs. and stayed that way for

> several years. I hadn't

> changed my eating habits, started exercising,

> nothing. However, around

> 1979 I began to have signs of fluid retention and I

> suspect that's when AIH

> first started showing up. I had to have a ring that

> I'd worn for years

> enlarged and I couldn't wear my wedding ring... it

> actually had cut into my

> ring finger. Also, my feet were hurting all of the

> time and I thought I'd

> developed a foot problem and started buying a larger

> size. Now, though, I

> can wear that same ring that I quit wearing years

> ago and I am back to my

> normal shoe size. This is a recent development that

> coincided with

> increased diuretics. Now if I could only get rid of

> the ascites and the

> puffiness in my upper legs (a new thing.)

>

> I was just plain sick on the higher dosages of

> Prednisone. No problem with

> too much energy. I was too weak to get out of bed

> most of the time. I

> didn't start feeling almost human until I was down

> to 20 mgs. and I

> continued to feel better until I was down to 10

> mgs., then everything

> started going wrong so I had to jump back up to 15

> mgs. briefly. Though

> pred contributes, I think it's only partly the

> culprit in this whole scenario.

>

> I agree, beauty is not and should not be measured in

> pounds, but if it was,

> most of us would be pageant winners! This is one of

> the most caring,

> thoughtful group of people I've ever had the

> privelege to know. I wish we

> didn't have the common bond that we have, but in a

> way, it's making most of

> us stronger and perhaps better people.

>

> Take care,

> Geri

>

>

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Elena Pheasant

_________________________________________________________

[Guest guest]

Geri,

Please forgive my long delay in replying to you. I am in the

process of moving and haven't had much time for anything. My family is

being very supportive though. They are really trying to help me with the

move. Actually my Mom and sister are in the town I am moving too trying to

locate a place for me to move. I was going to buy a house there, but have

been unable to sell mine here so can't afford to buy another one right now.

As for my skin I have noticed that it is a lot more dry and that the

bruises are terrible. I hit my leg several months a go and got a huge

bruise, but not I still have an indent there and is still has a bluish tent

(although not a bruise). I bruise almost if someone looks at me. That is

very frustrating for me.

As for the energy though I am doing great and am hoping they will

tell me I can come off the prednisone soon. I go back to the doctor on

6/8/99 and I am going to beg him to let me try it. All of my levels have

been good except for the GGT's when I was hospitalized last time, but they

didn't think it was a big deal. So I am so excited. Thanks you so much

Geri for being so supportive to all of us and I wish you and your husband

all the best.

Dorothy

> Re: [ ] wt & hair

>

> From: KATBERCOO@...

>

> Dear Dorothy:

>

> I noticed a strange thing with my hair and skin too. During the worst

> times

> a lot of my hair fell out. But also, my skin and scalp became so dry that

>

> they felt like sandpaper. You could see the coarse texture of my skin up

> close. As someone who had always fought the oily's and had to wash my

> hair

> every day, this was very strange for me. Even though my hair grew back,

> my

> skin has remained really dry. You can still see a course texture to my

> face

> (up close) and my hands are so dry that they are scaly on the back

> sometimes.

> Even though I'm in 'remission' this has not changed. Has anyone else

> seen

> increased dryness to the skin? Since I've been on the prednisone so long,

>

> I've also noticed a thinning to the skin. It looks like parchment in

> places.

>

>

> Glad to hear you're feeling good, Dorothy! I hope it continues for you!

> Take care!

>

> Kathy (AIH)

> Seattle area

>

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[Guest guest]

Elena,

Thanks for the kind words. Sometimes I feel guilty because I can be a bit

irrepressible when it comes to words. No one's ever accused me of not

having opinions or expressing them. I come from a large family and I grew

up surrounded by people who were willing to listen and who didn't hesitate

to try to help each other, if only with encouraging words (usually that was

all we could afford.) I'm not one of those people who can survive without

other people, so this group gives me so much more than I could ever give

back, though I try.

Take care,

Geri