Re: Prednisone taper also stomach stuff

[Guest guest]

Aimee,

We give Kelsey Children's Mylanta on an as needed basis, as recommended by

her rheumatologist. We've only used it maybe 3 times since she started on

the Naprosyn, and that was when she didn't eat much before taking it and I

gave it to her to try to prevent stomach upset.

[Guest guest]

Hi Aimee,

Wow. Everybody's case is so different. For my son Josh, even that 'slow'

taper would be way too fast! We go down by 2.5mgs up to 10. From 10,

we've only tried to reduce by 1mg at a time and the two times we got

that far, neither time was successful. We reduce at intervals of once a

month, if we can even do that. A lot of times things get too unstable

too quickly and we have to stay at the current level for longer than a

month. Maybe my son is in the minority in this, though. Most children

don't even need steroids for the period of time he's been on them.

Usually it's just a breif course to see them over the rough spots. Not

in our case, though.

Yup, I know what you mean about just wanting this to disappear. Who here

hasn't had similar thoughts? It's frustrating, isn't it? Trial and

error. Somebody on the adult still's list had a signature line that

read: That which doesn't kill us makes us stronger. I tend to believe

that, wholeheartedly. Our children are special people. They deal with so

much, physically and emotionally, and for the most part they manage so

well with whatever challenges they face. Part of that must come from

some pretty good parenting from us guys I know we all have our

moments ... but you don't sound like a crazy person to me! Quite the

contrary. Sounds like you're a wonderful parent, doing whatever needs to

be done to insure that your child receives the very best care for this

still-not-well-understood-disease, which can cause all kinds of troubles

and worries to fly in and out of our lives at the drop of a hat. Or,

more likely, the drop of a dose Thanks for sharing the update. I hope

Karl feels better soon.

Take Care,

Georgina

PS ... takes a pill called cytotec with each dose of his NSAID,

to help protect his stomache also.

Aimee Moles wrote:

>

> Georgina,

>

> Thanks for the thoughts. I think the Dr. is trying to decrease a

> little more slowly this time. We are staying at 15mg. for two weeks

> and then 10 for two weeks. He flared at 5 last time. We will be at

> 5 mg. of prednisone when we go back for a visit in late August. The

> rheumatologist is in New Orleans an hour and a half away so

> thankfully he is very reachable by phone. Really great doc and he

> loves kids. I feel so lucky. Everything he does is very up to date.

>

> I keep thinking this is just going to dissapear and that I have

> imagined it all. I hope this is not craziness setting in! They are

> so well one minute and so sick the next.

>

> Karl has been on Zantac or Asiphix for his stomach since the

> beginning. Do these prevent bleeding??? Anyone else on antacids?

>

> Aimee (Karl's mom)