Re: A Little (BIG) Celebration !!!

[Guest guest]

Happy to hear the good news about your CPK. I'm still a baby in all

this but I do have a question if someone could answer it.

Why is everyone wanting to get OFF pred if it's the pred that gives

relief? I know there are side effects, bad ones. So am I right in

assuming that I can expect to try and maintain a balance between the

PM symptoms and the side effects of the pred?

I'm pretty confused! HELP!

Ed LOL@me

> I can't hold this in any longer and NO ONE around here can

appreciate

> it..I have to share this with SOMEONE !!!!....My CPK was

> 97!!!....My name is Jacqui (Duluth, MN)...I was stung by a hornet

on

> Aug. 23 and that seem to set everything off again...On 09-18 my CPK

> was 1,598 (better than 15,217 when I first got this in 1988), but

> still out of the normal range...He put me on 40 mg. Pred. and 150

mg.

> Imuran for 10 days, then down to 30 Pred. for 10 days, 20 for 10

days

> and so on...Right now I'm down to 10 mg. Pred and 150 mg. Imuran

> everyday...I'm still having bad side affects from the Pred., but

the

> numbers are down in the normal range and I'm slowly reducing the

> Pred. and by early next year, I should be off of the pred. all

> together.....YEAH...YEAH...Happy Dance...Happy Dance.....I have

> absolutley NO strength or stamina, I feel like crap all day & can't

> sleep at night and my house looks like I'm getting ready for a

> Rummage Sale or something, but WHO CARES...The Pred./Imuran worked

> again (THANK YOU GOD)and the numbers are back in the normal range!!!

I

> still get out with the dogs twice a day for our walks, but spend

the

> rest of the day laying on the couch...Taking a shower *drains* me

of

> all energy (did you catch that - *drains*me), but WHO CARES...I

> really put the lbs. on this time and it is really affecting my

> breathing more than it ever has...I think it's the extra weight

that

> is causing the worse breathing problem...I have pulmon. fibrosis

from

> the interstitial lung disease, but the PFT didn't show much of a

> change (THANK YOU GOD, once again)- so I figure it has to be the

> extra weight...My face is so HUGE, I'm kind of embarrassed to go

out

> in public right now...That will get smaller with the lower Pred.

> amount...and it doesn't bother my poochies at all...They love me no

> matter what I look like, just so they keep getting their food and

> walks...LOL...Well, I don't want to get too carried away here, but

> since my Mom died in April - I don't have any family members close

by

> that even care if I'm sick or not...I have two siblings within

> walking distance of me, but they're too caught up in their own

lives

> to even ask how I'm doing...That's fine, but it would be nice if

one

> would just call and say " How ya feeling, Jac? " , but it's not going

to

> happen, so why dwell on it...Life goes on and my CPK was

> 97 !!!!...OK, I'll stop now and say *Toodles*...Sorry, if this brag

> offends anyone, BUT I'm very happy and that's what this list is

> for...Sharing the GOOD and the BAD times...THANKS for listening...

> Jacqui, Kodi(I happy Mom is feeling better),

> Casey(Hey,is it time to eat yet?)and

> Timmy the Timneh(Why are those two nit-wits always going

> outside-it's cold out there!!!...Peanut,

> where are my peanuts??...Hi..Hi..Hi..Hi..)

[Guest guest]

Hi Ed.

Prednisone works, but for some the side effects are not too pleasant.

Weight gain, mood swings, osteoporosis, diabetes, blood pressure

changes, are some of the possible problems. But for most of us, the

side effects are not too severe, and we are willing to put up with

them because of the alternative. Before prednisone, the 5-year

survival rate for dermatomyositis was less than 50%. I suppose the

rate was the same for PM. I am of the opinion that without

prednisone, I would have died, because I was seriously sick and

rapidly deteriorating. I believe the same holds true for Vicki and

several others here. Most of the time the prednisone works well

enough to prevent the muscle loss from becoming worse, so what

happens is that the muscle loss you had before starting prednisone

doesn't get worse, but it also doesn't get any better.

And you are almost right about IBM. It generally does not seem to

respond to the treatments for DM of PM, and in many cases is slowly

progressive. Someone with IIBM should be able to write about it with

more knowledge than me.

Stay warm.

Mike B

> Happy to hear the good news about your CPK. I'm still a baby in

all

> this but I do have a question if someone could answer it.

>

> Why is everyone wanting to get OFF pred if it's the pred that gives

> relief? I know there are side effects, bad ones. So am I right in

> assuming that I can expect to try and maintain a balance between

the

> PM symptoms and the side effects of the pred?

>

> I'm pretty confused! HELP!

>

> Ed LOL@me

[Guest guest]

Thanks for the info.

Ed

-----Original Message-----From: mjboyce25ca Sent: Saturday, December 15, 2001 9:10 PMTo: OurMyositis Subject: Re: A Little (BIG) Celebration !!!Hi Ed.Prednisone works, but for some the side effects are not too pleasant. Weight gain, mood swings, osteoporosis, diabetes, blood pressure changes, are some of the possible problems. But for most of us, the side effects are not too severe, and we are willing to put up with them because of the alternative. Before prednisone, the 5-year survival rate for dermatomyositis was less than 50%. I suppose the rate was the same for PM. I am of the opinion that without prednisone, I would have died, because I was seriously sick and rapidly deteriorating. I believe the same holds true for Vicki and several others here. Most of the time the prednisone works well enough to prevent the muscle loss from becoming worse, so what happens is that the muscle loss you had before starting prednisone doesn't get worse, but it also doesn't get any better.And you are almost right about IBM. It generally does not seem to respond to the treatments for DM of PM, and in many cases is slowly progressive. Someone with IIBM should be able to write about it with more knowledge than me.Stay warm.Mike B> Happy to hear the good news about your CPK. I'm still a baby in all > this but I do have a question if someone could answer it.> > Why is everyone wanting to get OFF pred if it's the pred that gives > relief? I know there are side effects, bad ones. So am I right in > assuming that I can expect to try and maintain a balance between the > PM symptoms and the side effects of the pred?> > I'm pretty confused! HELP!> > Ed LOL@me

[Guest guest]

Whee! Whoopee! Joining Jac in her happy

dance!.. Way to go gal, so very happy for you.

Teddi

mailto:teddifromok@...

[Guest guest]

Hi Ed

In my case the good results of the pred far

outweighed the side effects (at least so far

and I have been on it for 6 yrs) When I was

dx my arms & legs were like limp spaghetti

and my butt like a lump of lead. When I went

to sit down I hit the point of no return and

down I went.. If I was crooked I would have

to have someone help me get straight. I

couldn't dress, bathe, turn over in bed, etc

by myself. Pred got me so I could live a

more or less normal life. I have some

limitations and you certainly learn how to

some things different but I live by myself,

drive and do pretty well for an old greyhaired

68 yr old broad.<VBG>

Now, on the downside. I have to take med

for high cholestral (tried to get off it but no

luck as long as I am on pred) I have had

2 cataract surgeries & 2 laser surgeries on

my eyes...duh... 1 per eye....lol Also have

to take Actinet for weak bones and have

had problems with fragile skin.

Actually a small price for what I gained.

And since it looks like I will never be off

the pred that is good. Take 10mg per day

and have problems every time try to lower

it.

Teddi

mailto:teddifromok@...

[Guest guest]

Ed... Prednisone was once described to me as the pill from heaven and hell

simultaneously. It pretty much saves our lives or gives us our lives back,

but it takes something away, too. I've been told of bone loss, damaged

kidneys, etc. etc. etc. I'm sure the others in the group have better

memories or more recent up dates about the bad side of pred...you'll hear

more scientific info from them. Annette

Re: A Little (BIG) Celebration !!!

Happy to hear the good news about your CPK. I'm still a baby in all

this but I do have a question if someone could answer it.

Why is everyone wanting to get OFF pred if it's the pred that gives

relief? I know there are side effects, bad ones. So am I right in

assuming that I can expect to try and maintain a balance between the

PM symptoms and the side effects of the pred?

I'm pretty confused! HELP!

Ed LOL@me

> I can't hold this in any longer and NO ONE around here can

appreciate

> it..I have to share this with SOMEONE !!!!....My CPK was

> 97!!!....My name is Jacqui (Duluth, MN)...I was stung by a hornet

on

> Aug. 23 and that seem to set everything off again...On 09-18 my CPK

> was 1,598 (better than 15,217 when I first got this in 1988), but

> still out of the normal range...He put me on 40 mg. Pred. and 150

mg.

> Imuran for 10 days, then down to 30 Pred. for 10 days, 20 for 10

days

> and so on...Right now I'm down to 10 mg. Pred and 150 mg. Imuran

> everyday...I'm still having bad side affects from the Pred., but

the

> numbers are down in the normal range and I'm slowly reducing the

> Pred. and by early next year, I should be off of the pred. all

> together.....YEAH...YEAH...Happy Dance...Happy Dance.....I have

> absolutley NO strength or stamina, I feel like crap all day & can't

> sleep at night and my house looks like I'm getting ready for a

> Rummage Sale or something, but WHO CARES...The Pred./Imuran worked

> again (THANK YOU GOD)and the numbers are back in the normal range!!!

I

> still get out with the dogs twice a day for our walks, but spend

the

> rest of the day laying on the couch...Taking a shower *drains* me

of

> all energy (did you catch that - *drains*me), but WHO CARES...I

> really put the lbs. on this time and it is really affecting my

> breathing more than it ever has...I think it's the extra weight

that

> is causing the worse breathing problem...I have pulmon. fibrosis

from

> the interstitial lung disease, but the PFT didn't show much of a

> change (THANK YOU GOD, once again)- so I figure it has to be the

> extra weight...My face is so HUGE, I'm kind of embarrassed to go

out

> in public right now...That will get smaller with the lower Pred.

> amount...and it doesn't bother my poochies at all...They love me no

> matter what I look like, just so they keep getting their food and

> walks...LOL...Well, I don't want to get too carried away here, but

> since my Mom died in April - I don't have any family members close

by

> that even care if I'm sick or not...I have two siblings within

> walking distance of me, but they're too caught up in their own

lives

> to even ask how I'm doing...That's fine, but it would be nice if

one

> would just call and say " How ya feeling, Jac? " , but it's not going

to

> happen, so why dwell on it...Life goes on and my CPK was

> 97 !!!!...OK, I'll stop now and say *Toodles*...Sorry, if this brag

> offends anyone, BUT I'm very happy and that's what this list is

> for...Sharing the GOOD and the BAD times...THANKS for listening...

> Jacqui, Kodi(I happy Mom is feeling better),

> Casey(Hey,is it time to eat yet?)and

> Timmy the Timneh(Why are those two nit-wits always going

> outside-it's cold out there!!!...Peanut,

> where are my peanuts??...Hi..Hi..Hi..Hi..)

[Guest guest]

Ditto from me, Jac! Annette

Re: A Little (BIG) Celebration !!!

Whee! Whoopee! Joining Jac in her happy

dance!.. Way to go gal, so very happy for you.

Teddi

mailto:teddifromok@...