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Old 03-18-2009, 11:20 PM   #2
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Re: Hi I'm New here... Rhupus?

Cyberbrat, hi. You've had a lot going on! I had a tough time getting answers, mostly, I suspect, because I also stayed ANA-negative. I had fatigue, migraines, elevated sed rate, low WBC, weight & hair loss, periodic irregularities, severe GI problems (over 20 yrs.), urinary problems, anemia, recurrent pain flares (from age 13 onward), ETC. Rashes were the last thing to arrive: annular (targetlike) nonscarring lesions on arms & torso, for years. Lag time between sun & rash eruption shortened as time passed.

After seeing numerous local specialists, I took myself to a teaching hospital rheumatologist. Dx was Ro-lupus, positive for anti-Ro but ANA-negative. It's a very low-odds Dx, 3% to 5% max of lupus, I was told.

My most eye-opening appts. were with a dermatopathologist to whom the rheumie referred me. (That's a dermie who's also a pathologist & thus does his own labwork.) He did my umpteenth deep-punch biopsy, but he added to the usual microscopic work immunofluorescent stain tests, which previous dermies hadn't done. In lupus, these tests light up in a way that can ONLY mean lupus, which is helpful if blood results haven't been "caught", due to timing or due to a prolonged onset. I think the test is also called the lupus band test (LBT), and it can be done on lesional or non-lesional skin.

When you say bone erosion, do you mean the "mouse bites" seen in RA? Or severe bone thinning, as in osteoporosis?

I've read about rhupus, in Dr. Daniel Wallace's hardcover (it's excellent). Another helpful author is Dr. Robert Lahita. Many libraries have both.

Even though your ANA remains negative, did your drs. nevertheless run the full gamut of specific autoantibody tests? Like RF, anti-ds-DNA, anti-Sm, anti-Ro, anti-La, anti-RNP, antiphospholipid, anticardiolipin, etc.? (That's where I believe my local drs. could have done better. They didn't do the additional, more specific tests once they saw my ANA was negative.)

It's late, so I'll stop here & say good night. I hope you post more soon. Best wishes, sincerely, Vee
P.S. What do your rashes look like? Do they itch? Scar? Depigment?

Last edited by VeeJ; 03-18-2009 at 11:21 PM. Reason: added P.S.