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Date Posted: 15:03:13 01/26/09 Mon
Author: Ivy (exhausted)
Subject: Oh boy...a new plan...

Well I just came back from my rheumatologist today and I have to get OFF of the 6-MP and stay on 65 mg of prednisone for at least 2 weeks. Then I start on a NEW med to help me lower the prednisone...this new one can (of course) kill my liver and make me lose ALL my hair (not just make it thinner like the 6-mp). FABULOUS NEWS! The hair will grow back when off of the medication (if it doesn't work or I have to get off of it for some reason) and I do have a wig, and my mom said she will buy me a new one if I want when my hair falls out. I am nervous about starting a new medication...I am SO sensitive to EVERYTHING and NOTHING seems to working right anymore. I was started on a medication on Friday called tegretol for trigeminal neuralgia (facial/tooth pain) and vocal cord dysfunction since they are tied together by the same nerve (which is the nerve that gets inflammed on me). The medication worked GREAT, at first...it stopped me from upping my prednisone (YEA!!) and took away the facial pain, but then too much built up in my system and it caused pain on the OPPOSITE side of my face, so I had to get OFF of it!! So now I can only take it when I need it...CRAZY body!! My rheumatologist actually SPOKE with my neurologist today (because we told him that my neuro doesn't really understand what is going on with me), and now I need to see my neuro about getting off of topomax (which I was taking for migraines, that I only get when I lower my prednisone...so we don't know if they are migraines or the trigeminal pain)...I have a good doc...I just don't know about the right path that I am on...I hope this is the right one...but I thought that REstarting the 6-mp was the right choice...SIGH...I guess only time will tell...

Ivy

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