Yes my appointment was Monday. I guess I haven't posted because I haven't settled down to having just one feeling about
I had everything summarized on one page, with meds, lab tests, dr notes from the last year appended. He said that he'd been seeing several of my previous doctors patients in the last couple of months, and found that in general we were all being treated more aggressively thank he would like, with a few more meds than he would like. Some of my anti-depressant & anti-anxiety meds were being prescribed by by former rheumy because my shrink disappeared and at the time I has too stressed to find another...new dr didn't like that and indicated he wouldn't be prescribing them, as it wasn't his area (that's ok w/me).
He asked questions (the basic 11 questions) and did a cursory evaluation of joint movement. Ordered a HUGE amount of tests so he can see for himself what is going on. I think that's the only responsible thing for a new dr to do, so far so good.
However, he went on to say that he doubted it was lupus
. I don't agree that he'd looked at my history enough to know that, and think he was ahead of himself. I worry that because of my meds, the real problem won't show up because it *is* being managed by my meds. (Not that I wouldn't mind fewer, but I won't be pushed into dropping too much at once.) I trust he is keeping an
open mind, otherwise I'll put myself in a tizzy worrying.
Also said lots of cases once you get the lupus dx everything becomes lupus
. I suspect that is true for lots of cases, but I don't think he should have mentioned it without knowing my case better and seeing if it applied to me.
I'm not sure he really understood me when I tried to indicate I don't care about
dx (except as it matters to disability insurance and future health insurance), and that I list ALL my symptoms not to claim they are lupus but so that he, the expert, can decide what is/isn't applicable. I DO care that my symptoms are treated/managed. I wasn't able to make these 2 points as cleanly to him as I just did above; I hope to make that plainer in my next appointment.
I defended the Cellcept, which he pretty specifically said he'd never use except for SERIOUS organ involvement, by saying my brain was worth more to me than any side effects could ever be. He asked me to come down the Cellcept a little, which I have no problem about
as old rheumy & I were already starting to decrease it, and I've read it really shouldn't be used more than 18-24 months.
So, I'm to see him in a few weeks when my labs are back and the holiday/vacations are over. I need to give him 3-4 visits before deciding if he can really treat me in the manner I wish to be treated.
He may be one who goes more on labs than on symptoms -- that may not work for me.
Thanks for keeping up w/me,
Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions