RE: Re: /prednisone use

[Guest guest]

I am another one that will not take the prednisone. The after, and during affects

were too much more to deal with for ME. Did it, tried it, the more I got

to know it the less I liked it.

With Warm Regards, Ali Klisser"Be who you are, & say what you feel, because those who mind don't matter, & those who matter don't mind." ~Dr. Suess ~

To: Breathe-Support From: babsyphrett@...Date: Thu, 29 May 2008 16:26:04 +0000Subject: Re: /prednisone use

, stepping in on this issue for a moment (not meaning to step onyour toes Peggy :)The reason for taking prednisone when the underlying cause of PF is anauto-immune disease is because the pred can slow the progression bystopping the inflammation. That is the answer the Rheumatologist willgive you anyway.I was on prednisone for over 6 years after being diagnosed with PF. Istopped taking it 2-1/2 years ago due to all the side effects thatwere making my life miserable. I think it slowed the progressionsomewhat but not enough to make it worth taking the med.I had a bad RA flare for nearly a year, in my knees, but stillwouldn'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 prescribehave been proven to help. The only reason that prednisone may be ofuse is when AI diseases are involved, and even then it's adouble-edged sword. The side effects are numerous and hard to livewith. I chose to forgo all the meds in an effort to have some qualityof life. I have lost about 15% lung function since I made thatdecision, but I still stick to it. I would rather die knowing that Ihad time with my family than to spend it entirely in bed, or in thehospital ill all the time. That is just MY opinion and how I am handling my disease. I do takesupplements, as do many others on this board.Remember that you have to wean off prednisone very slowly. The Doc hasto be involved in the process.Again, best of luck to Don. I know this disease is a huge pain in thebutt, and very hard to deal with emotionally. And, if it's any consolation at all, I'm now entering my 10th yearwith PF. And I may have had it for a few years before diagnosis. Asyou know the prognosis for survival is 2 to 4 years, but my Doc's atNational Jewish in Denver told me 5 to 10 years because of my AIdiseases. I have lupus, scleroderma, rheumatoid arthritis, sjogrens,raynauds, crohn's and dermatamyositis. I could just as easily die froma stroke (I've had 3 mini's) or a heart attack as die from the PF, soI just live each day knowing it's a gift and pray I'll be givenanother....I'm not on the caregivers side on this one , so I can onlyimagine what you're going through. I like that you're being proactiveand finding out so much info. My Chaz has his head in the sand, thinksI'll be cured by taking vitamins, and my poor daughter just can'tdiscuss any part of it without breaking down. They're a big support asfar as house work, yard work, laundry, etc., but emotionally not ahuge support for me, which is why I'm on the board.Does Don have a good rheumatologist? I like mine because he agreeswith me....LOL!Hugs and prayers,Babs in Texas>> I have a question for you Peggy. Didn't you tell me that you arenot on prednisone? I vaguely remember that there are a few that haverefused it.> > > > > > > K> Central Il> Hubby ipf- 2006> As for me and my house, we will serve the Lord> 14> Change the world with e-mail. Join the i’m Initiative from Microsoft.