Guest guest Posted January 3, 2008 Report Share Posted January 3, 2008 This falls in the For What It's Worth category: I'm a 47 YO female with Lupus and Scleroderma...also known as Mixed Connective Tissue Disease. I've been ill with this for over 30 years now. I began feeling short of breath while walking my daily 4 miles appx. around the age of 35. Attributed it to allergies (as did my local GP)and kept walking. (And no, I no longer walk as I have rheumatoid arthritis also, and the SOB is bad, even with O2). During a severe lupus flare they found the PF. That was in 1999 when I was 39, so I've been living with it for over 8 years. I was on prednisone from the beginning. Typical for AI diseases. After 6 years of torture I said " enough " and tapered off. I'm currently only taking Aleve and Darvocet for my diseases. Well, a few supplements when I remember them....LOL. My point is that if your PF is caused by the lupus the prognosis is actually much better than if it's IPF. Or so I'm told. The last Doc told me I could go on for a great many years yet. I also see a Rheumy who shakes his head at me and let's me do what I want. Smart man. I live every day knowing that I could need the prednisone again. I pray every night that I won't have to. I WILL NOT go on it long-term however. It, and the other drugs I've tried, have caused WAY more problems than if I'd just used the Pred short-term. These diseases are insidious and don't go away. It takes some time to wrap your mind around that fact, so don't feel like you need to know everything right away. I'm still learning too. You said that the Doc's don't know " what NOT to do " , so they need to educate themselves better about your disease, or your multiple diseases. They need to work together to find the answers and they need to share info between them. PF, or IPF are both complicated. Lupus, or any other AI disease will further complicate things. Knowledge is power though, so arm yourself with all you can find out and don't be afraid to tell your Docs what you find. Welcome to the group! I wish you much luck in your quest for answers. Please feel free to ask any questions here, and to post any that you find from your doctors or research. Hugs! Babs in Driftwood, Texas > > > > > > > > > > New to the group. Interstitial pneumonitis w/double > pneumonia > > > 12/06. > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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