Re: Re: AIH and opportunistic viral conditions -- to et.al.

[Guest guest]

Oh my, 17; so young (and starting at age 11-I just can't imagine!!). I've only

been on steroids a couple of times & that was the packets of " declining dose "

Solumedrol

which wasn't too bad. But I can remember when my mom was on massive amounts

after her transplant and didn't sleep for a week. It was around the time of

the O.J. Simpson deal. And she said, " no wonder people kill on steroids! " That

was out of frustration when the visiting nurse came to their house & drew labs

daily then the meds were adjusted accordingly. She was having a terrible time

keeping things straight.

Do they say how close she may be to getting a translant?

Hang in there,

CECrimmins@... wrote:

is now 17 -- will be 18 in February. She still has a slowed

metabolism, nasty stretch marks, and terribly misshapen breasts from the

steroids.

She had gained about 80 pounds in three months and is now overweight, too. She

was kept on that high dosage (60 mg.) of prednisone daily for 18 months,

even though her liver numbers came down almost immediately. I was told she

would die if I weaned her down, and eventually I had to get a second opinion in

order to do that. She is not on anything now. I have no doubt that the

prednisone saved her life, but I think she only needed such a high dose for

about

ten weeks, and then it should have been tapered down. I feel awful that I

tortured her with those drugs (Imuran, too), and it was Albert Czaja at the

Mayo clinc who gave us the courage to wean her completely. But we've been very

lucky. I know that pred is necessary, and many other drugs, to control AIH.

Sometimes I wonder if really had AIH at all, but that is such a gray

area. Certainly, all indications are that she did/does. So I'm keeping my

fingers crossed that such an early onset (at age 11, but I think she'd had it

for more than a year . . .), maybe it will have a different course. Who knows?

My heart goes out to all of you -- I'm suffering from back problems and had

two botched surgeries recently. I had two prednisone shots recently in my

back and had all the side effects -- my face got moony, I have insomnia, and I

am voracious and moody. So I can only imagine if anyone needs to take the

stuff all the time.

Good luck, everyone, and Happy New Year -- a healthy and happy one, as much

as possible!

Crimmins

[Guest guest]

Oh my, 17; so young (and starting at age 11-I just can't imagine!!). I've only

been on steroids a couple of times 7 that was the packets of " declining dose "

Solumedrol

which wasn't too bad. But I can remember when my mom was on massive amounts

after her transplant and didn't sleep for a week. It was around the time of

the O.J. Simpson deal. And she said, " no wonder people kill on steroids! " That

was out of frustration when the visiting nurse came & drew labs daily then the

meds were adjusted accordingly. She was having a terrible time....

CECrimmins@... wrote:

is now 17 -- will be 18 in February. She still has a slowed

metabolism, nasty stretch marks, and terribly misshapen breasts from the

steroids.

She had gained about 80 pounds in three months and is now overweight, too. She

was kept on that high dosage (60 mg.) of prednisone daily for 18 months,

even though her liver numbers came down almost immediately. I was told she

would die if I weaned her down, and eventually I had to get a second opinion in

order to do that. She is not on anything now. I have no doubt that the

prednisone saved her life, but I think she only needed such a high dose for

about

ten weeks, and then it should have been tapered down. I feel awful that I

tortured her with those drugs (Imuran, too), and it was Albert Czaja at the

Mayo clinc who gave us the courage to wean her completely. But we've been very

lucky. I know that pred is necessary, and many other drugs, to control AIH.

Sometimes I wonder if really had AIH at all, but that is such a gray

area. Certainly, all indications are that she did/does. So I'm keeping my

fingers crossed that such an early onset (at age 11, but I think she'd had it

for more than a year . . .), maybe it will have a different course. Who knows?

My heart goes out to all of you -- I'm suffering from back problems and had

two botched surgeries recently. I had two prednisone shots recently in my

back and had all the side effects -- my face got moony, I have insomnia, and I

am voracious and moody. So I can only imagine if anyone needs to take the

stuff all the time.

Good luck, everyone, and Happy New Year -- a healthy and happy one, as much

as possible!

Crimmins

[Guest guest]

This is an older E-mail that I accidently sent while thinning out some the

E-mails in my computer. Sorry

WOOTTEN <lindawootten@...> wrote: Oh my, 17; so young

(and starting at age 11-I just can't imagine!!). I've only been on steroids a

couple of times 7 that was the packets of " declining dose " Solumedrol

which wasn't too bad. But I can remember when my mom was on massive amounts

after her transplant and didn't sleep for a week. It was around the time of the

O.J. Simpson deal. And she said, " no wonder people kill on steroids! " That was

out of frustration when the visiting nurse came & drew labs daily then the meds

were adjusted accordingly. She was having a terrible time....

CECrimmins@... wrote:

is now 17 -- will be 18 in February. She still has a slowed

metabolism, nasty stretch marks, and terribly misshapen breasts from the

steroids.

She had gained about 80 pounds in three months and is now overweight, too. She

was kept on that high dosage (60 mg.) of prednisone daily for 18 months,

even though her liver numbers came down almost immediately. I was told she

would die if I weaned her down, and eventually I had to get a second opinion in

order to do that. She is not on anything now. I have no doubt that the

prednisone saved her life, but I think she only needed such a high dose for

about

ten weeks, and then it should have been tapered down. I feel awful that I

tortured her with those drugs (Imuran, too), and it was Albert Czaja at the

Mayo clinc who gave us the courage to wean her completely. But we've been very

lucky. I know that pred is necessary, and many other drugs, to control AIH.

Sometimes I wonder if really had AIH at all, but that is such a gray

area. Certainly, all indications are that she did/does. So I'm keeping my

fingers crossed that such an early onset (at age 11, but I think she'd had it

for more than a year . . .), maybe it will have a different course. Who knows?

My heart goes out to all of you -- I'm suffering from back problems and had

two botched surgeries recently. I had two prednisone shots recently in my

back and had all the side effects -- my face got moony, I have insomnia, and I

am voracious and moody. So I can only imagine if anyone needs to take the

stuff all the time.

Good luck, everyone, and Happy New Year -- a healthy and happy one, as much

as possible!

Crimmins