Thalidomide experience- ??

[Guest guest]

Hello All,

My daughter Mackenzie is currently taking Thalidomide. I am not

sure if I can say if it is a good thing yet or not. She is still on

a very high dose of Solumedrol (500 mg/wk) and was dropped to that

only about a month ago from 750 mg, along with 2 mg Pred daily, plus

MTX, Cyclosporin, folic acid, leucovorin, pepcid, and calcium

carbonate (Tums). Mackenzie got very sick back in April and they

said she had the beginnings of MAS. She was hospitalized for 10

days and received more steroids than I thought was possible. She

came home on the 750 dose of Solumedrol twice a week along with 20

mg of pred daily and the rest of the above list. She ended up back

in the hospital again at the end of April. I think it was June

before we actually started the thalidomide at 50 mg daily, then up

to 100 mg when she was still having some problems. Sooo...as you

can see, I am not real sure what is doing what. We have been able

to decrease some of the steroids, but it seems she does feel it as

we do. A few complaints of this or that hurting, seems a little

more often now that it is so cold. I know this probably doesn't help

much but I am glad to see something being posted about now, because

when we were talking about trying it, I could find very little info

on its uses for JRA. I can only hope and pray, as we all do, that

this drug will help keep what happened to Mackenzie from ever

happening again. Besides the illness itself, the massive amounts of

steroids she received caused her to gain between 35 and 40 pounds in

about 2 months, which caused terrible stretch marks. They would

rival most womens pregnancy marks. They caused her to become very

hairy ALL over (she says to me one day " Mom I am getting hair down

THERE :0 " ) she was 6! Thankfully, the hair growth has subsided and

she seems to have lost most of it. It started causing muscle

atrophy, she was having trouble walking, especially stairs, not

because of her joints, but because the muscles in her legs started

deteriorating. She became very depressed and wouldn't talk to

anyone. She is doing much better now. Her muscles seem to have

recovered. The weight is still a tough issue for us, she has

stopped gaining, but is still carrying all that she gained during

that timeframe. I am sorry I have gone on for so long, and wish I

could say more about the drug, but I honestly don't know what is

holding her steady right now. Thanks for listening and I hope every

one of our children can have happy and pain free holidays (Moms and

Dads too ) )

Sue and Mackenzie, 7, systemic

[Guest guest]

Wow. You and Mackenzie have been through a lot. My heart goes out to

your family, and I just wanted to say I really hope things turn around

soon for the both of you. The first few years of this disease can be

the most wrenching and frustrating, until the right " cocktail " is found

for the individual child. It doesn't sound like you're there yet and I

pray that happens soon.

Lynn

Mom to Mickey, 10 systemic jra since 3

On Dec 21, 2004, at 2:57 AM, mudslid4952002 wrote:

Hello All,

My daughter Mackenzie is currently taking Thalidomide.  I am not

sure if I can say if it is a good thing yet or not.  She is still on

a very high dose of Solumedrol (500 mg/wk) and was dropped to that

only about a month ago from 750 mg, along with 2 mg Pred daily, plus

MTX, Cyclosporin, folic acid, leucovorin, pepcid, and calcium

carbonate (Tums).  Mackenzie got very sick back in April and they

said she had the beginnings of MAS.  She was hospitalized for 10

days and received more steroids than I thought was possible.  She

came home on the 750 dose of Solumedrol twice a week along with 20

mg of pred daily and the rest of the above list.  She ended up back

in the hospital again at the end of April.  I think it was June

before we actually started the thalidomide at 50 mg daily, then up

to 100 mg when she was still having some problems.  Sooo...as you

can see, I am not real sure what is doing what.  We have been able

to decrease some of the steroids, but it seems she does feel it as

we do.  A few complaints of this or that hurting, seems a little

more often now that it is so cold. I know this probably doesn't help

much but I am glad to see something being posted about now, because

when we were talking about trying it, I could find very little info

on its uses for JRA. I can only hope and pray, as we all do, that

this drug will help keep what happened to Mackenzie from ever

happening again.  Besides the illness itself, the massive amounts of

steroids she received caused her to gain between 35 and 40 pounds in

about 2 months, which caused terrible stretch marks.  They would

rival most womens pregnancy marks.  They caused her to become very

hairy ALL over (she says to me one day " Mom I am getting hair down

THERE :0 " ) she was 6!  Thankfully, the hair growth has subsided and 

she seems to have lost most of it. It started causing muscle

atrophy, she was having trouble walking, especially stairs, not

because of her joints, but because the muscles in her legs started

deteriorating.  She became very depressed and wouldn't talk to

anyone. She is doing much better now.  Her muscles seem to have

recovered.  The weight is still a tough issue for us, she has

stopped gaining, but is still carrying all that she gained during

that timeframe.  I am sorry I have gone on for so long, and wish I

could say more about the drug, but I honestly don't know what is

holding her steady right now.  Thanks for listening and I hope every

one of our children can have happy and pain free holidays (Moms and

Dads too ) )

Sue and Mackenzie, 7, systemic