To Beth

[Guest guest]

Thanks Beth ;-) I'm always curious to know what others have

found helpful in their treatment. I will ask the Doc about

pulmonary rehab. I'm not sure what that entails?? And I agree...I

will take what I can get from these lungs of mine :-)

Jo

Fibrosing NSIP 3/05

CA

>

> Jo,

> Thanks! I'm happy to be coming off the pred, though I have to say

I haven't had nearly the problems with it that others have. My side

effects have been moderate at the most. Even when I was at 80mg.

The worst was sleeplessness. But since I'm not working it was more

a frustration than hardship and it pretty much went away once I got

down to around 40mg.

> Anyway as far as what worked for me...hmmm. I would have to say

that the prednisone definitely stablized me back when I was first

diagnosed. I was very very sick last June and was on high doses of

IV SoluMedrol (IV prednisone) in the hospital and then came home on

the oral pred. It stablized me and my hope is that I remain stable

without it. I use Advair (which has an inhaled steroid) to help

control the cough. That has definitely helped. I also use DuoNeb 2

or 3 times a day in the nebulizer. It helps open things up

temporarily and makes it easier for me to exercise. I also take NAC,

don't know if it helps or not but my doctor said it can't hurt so

I'm taking it. I also take Mucinex when I have any hint of mucous so

that it is easy to cough up and out. The thing I did that helped me

most is pulmonary rehab. Honestly it has helped almost more than

everything else. It helped me to lose some weight while on the pred

and just feel like I was actively doing something to

> help myself.

> That is the most frustrating part of all this isn't it? Feeling

like there's not alot we can do to have an effect on anything. My

doctor at Columbia Pres in NY told me that NSIP is one of the " best "

of these diseases to have because it " doesn't always progress " and

the life expectancy is " considerably longer " than most of the

others. I'll take what I can get but I'd still rather have a healthy

set of lungs. Know what I mean?

>

> Beth in NY Fibrotic NSIP 06/06

>

> Don't try to explain it, just nod your head.

> Breathe in, breathe out. Move on. J. Buffett

>

>

>

> Re: What's up with me!

>

> Beth that's awesome! I would love to be off the prednisone :-

)

> Can I ask, what has worked for you? I see that we have the same dx.

>

> Jo

> Fibrosing NSIP 3/05, CA

>