Now What?

August 28, 2006

So I go to my new rheumy today. Well he says I don't have RA per say

but I have mixed connective tissue disease. Ok so what does that mean

for the AP? Every time I turn around they are telling me something

different. I could just cry and don't know what to think anymore. I

just want to throw all the meds in the trash and wait until I die. He

agreed to let me off the Methotrexate since I think it isnt working

but he wants to start me on Plaquenil. He isn't big on the AP. Just

when I think I have RA now I am told all this. I don't know what to

do now.

August 28, 2006

With all due respect, regarding the below response is not necessarily

helpful advice. I have been corresponding w/ by personal email & she

is diagnosed w/a disease that has potential complications including

pulmonary hypertension & fibrosis. I believe her disease diagnosis to be

accurate based on her symptoms & labs. While I do advocate experimenting

w/Minocin, it is NOT prudent advice to tell this young woman that she should

throw away the Dr.'s script. Placquenil is a well tolerated drug w/a good

safety profile & provides enormous benefit which the pt. needs right now. I

would suggest that once she achieves stabilization w/the Placquenil, that

she then could take Minocin. Achieving a clinical remission within the 1st

2 years after diagnosis is very important w/this disease & in my humble

opinion, Placquenil probably gives her the best shot. I realize that you're

just trying to calm her fears, but be careful about what advice you dispense

& she should not take a medication labeled for someone else. I'm glad you

have achieved such good results for whatever rheumatic disorder you have & I

definitely think the infectious theory needs explored. However, Minocin is

still not a proven treatment for MCTD, yet Placquenil is. Patrice

_____

From: rheumatic [mailto:rheumatic ] On Behalf

Of ehgooding

Sent: Monday, August 28, 2006 7:42 PM

rheumatic

Subject: RE: rheumatic Now What?

Hi,

This is why I said in my earlier email not to worry about labels. So many

of them don't know what the heck they are doing so don't trust they know it

all. They are winging it. They give you a label and that lets them know

which meds to write the script for. They don't always know this but they

are. Don't let this guy mess with your head; you are going to be OK. But

you do need to continue your quest to get the Minocin.

If you can get the Minocin it will all change. So that's all I'd try to do

.... get that Minocin. You may have to play along; i.e., take the piece of

paper/RX for Plaquenil to placate him; don't fill it; call him in a week and

tell him it makes you deathly ill; read about the side effects and tell him

you got a couple of them .... and tell him to call in an RX for Minocin

since you've tried all his meds and they don't work for you. And if he

won't help you tell him you are going elsewhere ... and go to an internist

to see if you get better results. ... another thought - do any of your kids

have acne? See if you can get Mino for them and then take it yourself.

Fight dirty. Do whatever you need to get the Mino. I'm not kidding. El

rheumatic Now What?