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Date Posted: 13:29:18 03/09/09 Mon
Author: Ivy (*shaking my head*)
Subject: Wrong treatment for YEARS now...

Well doesn't it figure...I mean, I have read about how long it takes people with MS to get diagnosed (sometimes 10 years or more...) same with people who have lupus, or any autoimmune disease that presents with multiple symptoms, as doctors only look at their one little piece of the puzzle instead of the BIG picture. With me, doctors treated me FIRST, asked questions later...further complicating things...they treated me with prednisone (which as you know skews most tests), prednisone is seen as the atomic bomb of drugs...it kills every kind of inflammation in it's path. That is the good and bad of the drug...it kills everything. It worked for a good long while in me...killing the right kind of inflammation...until now...when it has stopped working, even at HIGH doses (80 mg now, but dropping to 70 tomorrow :-D ). So we started adding steroid-sparing drugs to "help" it do it's job...they worked for a while, but have their own risks as well...each doing something, but not enough, or too risky to stay on them. I am on Arava now, which seems to be working on my blood (my platelet count is back to normal, but clinically it's done nothing yet) it can take longer to work clinically my doc says.

What is SO frustrating to me, is that something was recently tried on me...a new medication...a nerve medication...a SEIZURE medication...for when my throat closes, instead of upping prednisone, and it WORKED! It worked within 40 min, AMAZINGLY WELL!!! When I was FIRST in the hospital in 2000 for all of this, I was tested for seizures, because of all my symptoms, but I don't have "seizures"...I do, however, have a neurological disorder that is TREATED with seizure medications...with NERVE medications...I had ALL the same symptoms back then that I do now...why it took so flipping long to put pieces together I will never know...

I could have been spared 8 yrs of prednisone...unreal to me.

Doctors NEED to LISTEN! I FINALLY feel VINDICATED after ALL THESE YEARS! It's like a weight has been lifted...I have a plan to lower the prednisone...I have a medication to get me through the flare=ups that's not going to kill me. I have a helper medication that SEEMS to be helping and not killing me...lets just hope it stays that way for a while. I really could use a break (not that I'll be getting one as I wean down LOL)...we all know how fun that is LOL!

Ivy

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