Re: /prednisone use

[Guest guest]

, stepping in on this issue for a moment (not meaning to step on

your toes Peggy

The reason for taking prednisone when the underlying cause of PF is an

auto-immune disease is because the pred can slow the progression by

stopping the inflammation. That is the answer the Rheumatologist will

give you anyway.

I was on prednisone for over 6 years after being diagnosed with PF. I

stopped taking it 2-1/2 years ago due to all the side effects that

were making my life miserable. I think it slowed the progression

somewhat but not enough to make it worth taking the med.

I had a bad RA flare for nearly a year, in my knees, but still

wouldn't take it again. I did let them give me shots in my knees however.

There is no cure for PF, and none of the toxic drugs they prescribe

have been proven to help. The only reason that prednisone may be of

use is when AI diseases are involved, and even then it's a

double-edged sword. The side effects are numerous and hard to live

with. I chose to forgo all the meds in an effort to have some quality

of life. I have lost about 15% lung function since I made that

decision, but I still stick to it. I would rather die knowing that I

had time with my family than to spend it entirely in bed, or in the

hospital ill all the time.

That is just MY opinion and how I am handling my disease. I do take

supplements, as do many others on this board.

Remember that you have to wean off prednisone very slowly. The Doc has

to be involved in the process.

Again, best of luck to Don. I know this disease is a huge pain in the

butt, and very hard to deal with emotionally.

And, if it's any consolation at all, I'm now entering my 10th year

with PF. And I may have had it for a few years before diagnosis. As

you know the prognosis for survival is 2 to 4 years, but my Doc's at

National Jewish in Denver told me 5 to 10 years because of my AI

diseases. I have lupus, scleroderma, rheumatoid arthritis, sjogrens,

raynauds, crohn's and dermatamyositis. I could just as easily die from

a stroke (I've had 3 mini's) or a heart attack as die from the PF, so

I just live each day knowing it's a gift and pray I'll be given

another....

I'm not on the caregivers side on this one , so I can only

imagine what you're going through. I like that you're being proactive

and finding out so much info. My Chaz has his head in the sand, thinks

I'll be cured by taking vitamins, and my poor daughter just can't

discuss any part of it without breaking down. They're a big support as

far as house work, yard work, laundry, etc., but emotionally not a

huge support for me, which is why I'm on the board.

Does Don have a good rheumatologist? I like mine because he agrees

with me....LOL!

Hugs and prayers,

Babs in Texas

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> I have a question for you Peggy. Didn't you tell me that you are

not on prednisone? I vaguely remember that there are a few that have

refused it.

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> K

> Central Il

> Hubby ipf- 2006

> As for me and my house, we will serve the Lord

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