Hi, Fran. Did your GP recommend the rheumatologist? If you get along well with your GP and still can't book 10-15 mins. with your rheumie, maybe your GP could review basic questions with you? Again, I'm only a (dumb) patient, but here are some things I'd ask. I'd make my list succinct, going just for the "biggies" the first time out. For example:
LABS THAT WERE DONE:
* GFR looks on the edge of high? (I don't know what it is, sorry.)
* BUN/CREATINE on edge of high? Was urinalysis done to check for renal impairment? If not, why not? Who will be monitoring?
* PLATELETS edging towards low? Who will be monitoring?
LABS APPARENTLY NOT DONE:
* Urinalysis? (
I'd insist on this.)
* Specific autoantibodies? (I think these are useful to understand "odds". i.e., certain autoantibodies are more likely to affect certain organ systems. Also can raise red flags for ADDITIONAL problems, like secondary Sjogren's syndrome, per your mention of dry eyes. Also, antiphospholipid syndrome, aka "APS" or "sticky blood", the clotting disorder for which a different therapy is sometimes necessary. Headaches are a possible symptom, per the "sticky post" on APS.)
IS LUPUS THE ONLY POSSIBILITY?
* Which ACR criteria were considered fulfilled? (As a dumb patient, I'm wondering about sun sensitivity, oral ulcerations, arthritis, and positive ANA.)
* I'd also wonder about Sjogren's syndrome (per above), for which best test is probably a lip biopsy?
* I'd also want drs. to rule out APS (antiphospholipid).
DO I NEED OTHER CONSULTS?
* Nephrology? (If BUN/creatine deemed worrisome, and/or if urinalysis reveals something amiss.)
* Eyes? (re: previous visual disturbances. PLUS, people who take Plaquenil should have a "field vision test" done regularly.) And if headaches persist, I'd want more tests!
WHAT ABOUT RASH?
* If it could be a reaction to Plaquenil, must I cease taking Plaquenil?
* If I'm on GENERIC Plaquenil, would name-brand be worth a try? (Are "fillers" sometimes the problem?)
WOULD *YOU* BE COMFORTABLE WITH WHAT'S BEEN EXPLAINED?
* Are there other rheumatologists within 1-2 hrs. travel time whom I should see ongoing, or just to confirm, or at least until I get my bearings? (I believe you're allowed to ask here & that board members may reply with certain info only. See the "FAQ" spelling out what people may say in response.)
* Should I see other specialists (per above)?
* Recommended ways to learn more? (Books? Local support groups, who BTW, also might be able to suggest a clearer-speaking rheumie!)
Fran, I'm sure you can edit or add, yet still keep the list "punchy". Because of where I live, I switched to a teaching hospital rheumatologist, about an hour commute; but once I stabilized, I go in less often. i.e., if you don't have "major organ involvement", then odds would be good that you wouldn't have to travel that often. What major cities/hospitals are you the closest to?
I totally understand how problems for decades can make you accept those problems as "normal". That was my trajectory, too; I call it "the curse of the sub-acute", meaning worse than "skin-only" but less than "major organ involvement". I bet such patients are FAR harder to diagnose than people who present with 100% awful symptoms/labs. But, gee, you DESERVE better explanations at diagnosis, AND you REQUIRE confirmation that nothing more serious is going on. We'll be thinking of you. Keep posting, OK? Sending all my best and a huge hug, Vee
P.S. For dry eyes, I was told to try OTC drops. Also, my eye dr. gives me samples to test-drive.
P.P.S. When you have your regular checkups (GYN, eye, dental, etc.) and you update your medical history, that's a good time to solicit input, by asking those other drs. if they know anyone good at lupus. You can ask blandly without criticising your current rheumie, in case they all play golf together, or something.