Hi,
It is very frustrating to continue to hear Sjögren’s is best treated by a "team" of medical profesionals. I've found assembling a team pretty impossible in east Texas. I was diagnosed by an ENT, now retired, in Wisconsin about 6 years ago. I have experienced reduced body aches and a huge reduction in rosacea by keeping gluten free and doing daily dance stretches and exercises. I found a pulmonologist three hours away in Dallas who has experience with Sjögren’s patients, but although I have lung damage and very much want to continue singing (I have a college degree in vocal music), she told me I could come back "if I wanted, since my lung function is as good as anyone else my age". My thought when she first told me this was, wow, most people who are 72 can't breathe very well! But I want to keep singing as long as I can, and my lungs are very marginal for someone who has been a "breathing athlete" their entire life. I want to keep them as functional as possible.
I now have a local Sjögren’s experienced eye doctor, but not until after disappointing results from my cataract surgeries.
My GP is very attentive, but not experienced with Sjögren’s.
I have a general orthopedist, who says I may need knee replacements in the future, but considering the outcome of my cataract surgeries, I'm not thinking positively about that prospect. I do try to stay physically active.
I haven't found a rheumatologist.
I need help locating the Sjögren’s specialists I need. Is there a source here to help me find them in east Texas, maybe a Sjögren’s Experienced List of medical professionals that is area specific? Or maybe a Sjögren’s experienced doctor who could help remotely coordinate my treatment?
Is there, also, help getting new medicines like Ciqua for my eyes, and Trelegy for my lungs, for someone who is on Medicare, so is unable to use those drug company coupons?
I would very much like to participate in drug studies, but have not found one in east Texas. Perhaps there might be some elsewhere that my local GP could monitor. There have been some studies advertised on Facebook, but giving out personal information such as specific birth dates is not a good idea on such a public format.
Thank you for any help you may be able to extend.