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Date Posted: 13:42:40 01/29/08 Tue
Author: Ivy (I don't even know)
Subject: My crazy system

After 5 weeks of high dose steroids, tapering down to my normal dose of 7 mg, I made it...for 2 1/2 weeks...then I flared right back up again. I am now on 15 mg for a whole month before trying to taper down by 2 mg, then wait 3 weeks, then another 1 mg, then another 3 weeks, and so on...it should take me 3 months to get back to 7...I am less then pleased about this! I am also VERY upset by the fact that my docs (both agreed) that no matter what chemo drug I am on, I will still have my flare ups...I will still need higher dose steroids...and I will still have to fight like crazy to stay stable. This was NOT the news I was hoping for! It is what I knew deep down, but not what I wanted to face. Now I have no choice. If I can't lower my dose during this long wean, my docs and I will talk about using methotrexate as the steroid-sparing drug instead of 6-mp. But they are both afraid of what the side effects will be on that drug, since I do OK on the 6-mp, and I am SO sensitive to meds. I know I will get through this...I just wish I didn't have to. I wish I could just have a nice, long break. I really needed one...I still do.

I am doing pretty well on the 15 though...hopefully I can stay stable for the month and give my body time to heal itself before torturing it again by dropping. My docs think the stress of the weaning is what flared me up again...nice huh?!?!? Thank goodness for therapy and this website!!! I would go crazy without!! :-D

Love to you all!!!

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