When I was already dx’d w/ Sjogren’s and SLE since 1992 (age 36, tho looking back, relatives, MDs saw Lupus in my late teens, early 20s) by an amazing Rheumatologist who had served as Pres. of Amer. College of Rheumatology, but did not want to (in those yrs) write down dx for fear of no good insurance, etc., I suddenly found myself w/ opportunity as empty nester to move to FL in 2003 from Philly area, Husband commuting, so why not to where I could function so much better?! I continued to go north and see my Rheumy, and then, at Dana Farber where we had relatives I found myself ruling out a tumor as lipoma not sarcoma. Anyway, a bone scan showed cause of horrible horrible pain: symmetric inflammation neck to feet joints, soon enough, a dx also of RA, w/ positives, 1st time ever in RF and CCP and bakers cysts, CT type hand MRIs showing RA. My rheumatologist for purposes of dx must have called me after my return to FL 3 times to emphasize the need he saw that I only see a Univ. affiliated Rheumatologist in FL. That was 2006; my only ever “perfect” Rheumy in Philly retired, and I was just too tired to find the univ. affiliated Rheumy. I chose one w/ a good enough reputation, but he isn’t that good, and darned if I didn’t have to go and “prove” all over again, my now 3 biggies I call them: Sjogren’s , RA and SLE.
I suddenly, oddly find myself now in the worst ever flare of Lupus ( I believe this is mostly lupus) with my Boca Raton Rheumy who says I know enough about myself and at my age, that I should choose my own dose of prednisone to go w/ all my other meds like methotrexate. I cannot any longer take plaquenil, or Ultram or any NSAIDS due to really bad side effects after a decade plus in the 90s on them, plus myasthenia Gravis which yells out no plaquenil.
Anyway, pls forgive the long story: I think I know everything medical and complementary to do after reaching 57!
Does anyone know a U Miami or Jackson Rheumatologist that is good, great?! I have so many autoimmunes that I cannot even believe it myself, hit the jackpot so to speak; and to add to misery (but my attitude is good I believe!!) I have untreated (no fusion, as too difficult back in 60s, for working Mama) scoliosis; the surgeon told my Mother I would die by 40 w/o a fusion, heart and lung “smashed” together (fusion not possible to do now even w/ best orthos opinions); my greatest compliment I believe, is my Husband’s joke that I was so busy raising our now grown Daughters that I “forgot” to die!! 
(truly left my mind that anyone had said it!!)
Unfortunately a few minor heart attacks, congestive heart failure, and shrinking in height as predicted due to one curve becoming 4, therefore 5’5" to 5’1"; then there are just a few of my SLE jackpots I’ll list here (in addition to horrible teeth along w/ my Sjogren’s) Proteinuria, interstitial lung fibrosis, perhaps just from mycobacteria fortuitum after poor surgical aftercare post thymoma (comes w/ MG) removal, CNS lupus, Vasculitis, iron deficiency anemia requiring IV Venofer (at least not transfusions anymore!!) blah, blah, goes on and on…while I care deeply for others, I seem to adopt my own Mama’s less than sympathetic attitude about myself, less than caring about myself. Therefore I have not taught my Daughters to care well about their parents: my poor Hubby got early onset Parkinson’s at 50: he is now 58. He went out after being corporate atty and returned to an old love: making a 1/2 hour Blues Show every week! Heard by computer or shortwave in 127 countries!! I decided to “throw” myself into caring for him, forgetting I had a self, empty nester and ready if not so undependable and exhausted and w/ new problems it seems so often, to go back to my old self: working, spiritual and volunteering w/ some great interests in new areas!!
SO, I am in a flare, and based on having just the worst fatigue, exhaustion, hair loss, appetite loss, movement loss (back in my wheelchair 
mostly due to (well treated) pain, lupus fog, and on and on, I remembered Boston Rheumy dx’ing me w/ RA, starting me on 60 mg. Prednisone, dropping it down to 20 mg. and slowly slowly down…My “regular” Boca Raton Rheumy has me on 12.5 mg. Methotrexate / one day a week, and 5 mg. 1x day every day., along w/ Folic acid 6 days a week when I am not on my Methotrexate Tues.
I decided 20 mg. prednisone for worst lupus flare ever was good. Soon I called my Rheumy’s office wondering had I done correct thing? They said Yes! But drop to 15, wait a week, then stay at 2x 5mg. or 10 mg. a day until I return to office (end of this week). Oddly I cannot go below 2 1/2 x 5 mg. Prednisone; 10 mg. oddly just will not “cut it,” or allow even minimal functioning. I do now a (it’s a step back) Tape I LOVE!! “Yoga in Bed,” where at least half of me is doing real Yoga poses, meditation, etc. Just cannot do Downward Dog!!
So maybe this way everyone knows who I am. I so so apologize for this length; but even if your opinions are just (no just!!) about how much Prenisone is good to cover a bad, bad Lupus Flare, then I am eternally grateful. Wishing you all good health, happiness, energy, and all of all things you need.
Love Always, Lizzie Burtiebee Thank You.
Dr Elaine Tozman - UM Miami
Dr Donahue (he’s kinda an asshole though) at Cleveland Clinic in Weston
Dr Christine Savage- cold but smart- UM Sylvester center deerfield.
Many many thanks! It is so hard to start “cold,” even though I live so close. You have been so helpful; we 'll let you know how things go.
I go to Christine Savage at UM Sylvester. . She’s always been warm to me, good bed side manner. .Her nurses and assistant’s are great too
Again, more thanks than someone who keeps falling asleep (me!! can express. Thank You.
I forgot about Dr. Kapelia(spelling?)in plantation next to Westside region hospital. …she was the first rheumatologist I saw a couple times over 3 years ago when I had a mysterious beast infection that was the beginning of everything. .she was VERY kind, interested, and knowledgeable! She clearly saw my reynauds ,was suspicious of my random infection and felt my low C4 complement was a warning flag. She did want to do blood work every six months but also said to come in if and when something changes, she is very intuitive!I didn’t bother to go back because I was very much in denial that I could be sick and just went on with my life. … I’m with Dr. Savage at UM because I was already seeing a hemotologist and orthopedic oncologist there…obviously I was sick and got there fast so I was referred to her by them, still in denial lol. .love Savage, she awesome! very aggressive in treating me, smart, compassionate and truly wants to save me but if I didn’t have her I’d be with Kapelia!
I agree. Savage is awesome. Don’t get me wrong. I call and email her for everything. She’s saved my life. I think just sometimes I want to hug her and sometimes my health frustrates both of us that we want to scream.
DEAR JEN, MY BEST FRIEND WHO MORE LIKE A SISTER. WANTS TO PAY FOR A PLANE TICKET TO GO TO FLORIDA. JUST YOU NEVER KNOW, I TOLD HER NO WAY THEIR ARE NO DRS. FOR PAIN MGR IN FLORIDA.
SHE LOOKED AND I TOLD HER THAT IF I HEARD OF ONE I COULD CONTACT HER.
SO, IF YOU GET A NAME SHARE IT.
HER PUSHING ME TO GO TO FLORIDA, IS STUPID, I AM SO SICK WITH PAIN RIGHT NOW!!
I JUST CAN NOT GO ANYWHERE NOT EVEN CHURCH NEVER MIND FLORIDA. THE CHURCH IS ONE BLOCK AWAY FROM ME. BUT, I CAN NOT GET DRESSED TO GO. TOO WEAK.
LOVE MICKEY AND RUSH
ITS SOUNDS LIKE THE BOCA RATON DOCTOR IS AFRAID TO DX YOU WITH A DOSAGE. WHAT TYPE OF DOCTOR IS THAT?? TO ME IT SOUNDS LIKE HE IS LEARNING FROM YOUR BODY FOR OTHERS. I GOT OFF ALL THAT STERIODS, CHEMO AND PLACQUINEL. NO MORE FOR ME. JUST PAIN MEDS. THEY HAVE ANOTHER SIDE EFFECT BUT IT IS BETTER THAN THE USUAL MEDICATIONS.
BEST WISHES, IF YOU FIND A DOCTOR IN FLORIDA LET ME KNOW. PLACE A POST AT THE DISCUSTIONS.
MANY BLESSINGS
MICKEY AND RUSH
I’m actually in a hospital in Albany New York because the treatment I was getting in Florida was so poor. Granted, I’m also seeing a specialist for degos here. But I haven’t found the treatment in Florida to be grand. Unless you are going to university of Miami or the mayo clinic ( that would be my first choice) the health care is sub standard. But that’s just my experience.