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[QUOTE=VeeJ;3511716]AJ, hi. I've read that testing facial rashes is less straightforward, as your rheumie stated. First off, it's your face, which is probably harder to biopsy. Then there's the cosmetic consideration (scarring) to consider. And if the dr. chooses to biopsy some OTHER area (i.e., a lupus band test, done on nonlesional skin), I think results there are positive in a much lower percent, making a "negative" harder to interpret. i.e., you can have SLE but pretty often have a negative LBT result.

Big question: how much is certain about your LUNG FINDINGS? It's stated in the lupus hardcovers* (Dr. Daniel Wallace &/or Dr. Robert Lahita) that Plaquenil is appropriate only for non-organ-threatening lupus. So if your known LUNG PROBLEMS are indeed *lupus-related*, that ALONE may mean Prednisone is warranted. ( * These hardcovers are in most libraries & bookstores.) Maybe you could seek more info on lupus & lungs, and what your findings suggest.

Another subject: You said your ANCA is positive. What did your rheumie say that indicates?

On asking YOU to choose whether to start medication: I'm with you---I'd find that odd, esp. since your urine, APS, etc. tests aren't back yet.

Anyway, in your shoes, I'd be wondering about the same things & wanting to review & confirm before starting any medication. Did you schedule that 2nd opinion appt. with the teaching hospital rheumie? I hope you keep posting & let us know how you're doing. Hang in there! All my best, Vee[/QUOTE]

Vee, you have no idea how helpful you've been. Thanks for the great info. about facial rashes.

As far as my lung situation, I had hilar adenopathy that finally resolved on its own. None of my docs know for sure what was/is in my lungs because we decided against invasive thoracoscopy surgery. And because my lung function tests came out above average, we took a wait and see approach. Because my ACE was positive, it could be due to sarcoidosis. I have stable lung nodules, too, but those aren't caused by lupus. But the lung lymph nodes could be due to lupus. I have adenopathy in my axillary nodes, too. Biopsy of them was inconclusive. I'll definitely have to pick up one of the books you mentioned over the weekend. None of these lung findings caused me any ill effect. They only showed up accidentally last year.

About ANCA being positive, rheumatologist said it didn't confirm anything. My titers for it came out negative. So no vasculitis. My research shows that my ANCA pattern is typical of SLE, but has no definite prognostic value.

I had to ask the rheumatologist to do some additional tests. She said they're very expensive. But I asked her which ones would help determine if something is going on, if I feel well now? So that's what prompted the latest bloodwork, which I am waiting on.

I'm having to jump through hoops to get all my past year's worth of records to the teaching hospital. But I won't give up.

Thanks again for all your great advice, and have a great week--
AJ





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