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My rheumy appt. LOL

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Hi everyone

I went to my follow-up appt with my rheumy today... well, from a 55 sed rate

2 wks ago, as of yesterday it is ... tada!!! *** 17 ***

WOOOO HOOOOO!!! i hope it lasts!!!

mind you i was on 75 mg daily since July 27... but as of yesterday i started

decreasing my pred by 5 mg... i told my rheumy i already started to taper

off and he said that's fine and he would have suggested the same thing... he

really wants me off the pred ASAP but safely... i'm tapering off at 5mg

weekly... he was very worried about me flaring while at 50 mg weeks ago, but

he wants to see me again in about 4 to 5 wks when i'm down to about 45 - 50

mg to see how i'm doing and if i flare again while tapering off, he wants me

to call him and let him know...he was quite baffled about that, as was i.

He even touched my nose and noticed there was a difference and that it WAS

swollen when i saw him last.. NO DUH!!

When i asked why i flared etc, all he could do is shrug his shoulders and

say, it's hard to say why and when it happens... and not much is known at

this time... i also mentioned Minocin and he laughed and said 'sounds like

Mayo Clinic stuff to me' LOL.. can you imagine..ugh!

anyway, i asked him if i should flare again while tapering off would he

consider immuno-suppressants and he said yes, but wants to wait and see

first and just taper off pred on it's own... he only wants to cross that

bridge when we come to it.. He feels there should not be any reason to flare

up again, seeing this is only my second attack with RP and my first was 6

yrs ago... he doesn't think i'll flare again, but didn't explain why he felt

that way, he's very strange that way...

I also asked him if stress can contribute to the flaring and he again

shrugged his shoulders and said he doesn't think so...LOL

He is very conservative when it comes to medical treatments especially with

prednisone... he's the rheumy who didn't prescribe pred with my sed rate at

85 all those wks ago... he really felt it was something else, when asked

what, he shrugged again... LOL... i ended up on Pred only because i

practically begged the attending ER doc when i had the TA biopsy and severe

headaches..

But the rheumy didn't have much say on that since the headaches subsided

immediately after taking it... he just shrugged his shoulders and said, it

may or may not have been the pred, it's hard to tell.. acccckkkk!!!

He's also sending me for an echocardiogram.. he can be so exasperating, he

seems so caring and upfront sometimes and other times he just doesn't seem

to be willing to be more aggressive or receptive in other treatments...

sigh!!!

anyway...i'll be interviewing new potential rheumy's soon, so if any of you

have a list of questions i should ask, please feel free to post them so i

can prepare my list/questionnaire... LOL...

thanks for putting up with me...i love you all very much... take care

love

Carmela

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