Summary of my doctors appointment

At my appointment yesterday I reiterated to the doctor how important it is to me to get off of prednisone. She shares that but again reassured me she has my best interests at heart and in her mind. She said we may get to a point where we agree that "this is as good as it gets" but she doesn't think we are there yet.
I inquired about the following treatments:
Rixuximab
CellCept
IVIG
All three of these treatments are discussed on the Myositis Message Boards and I was wondering if any of them could help me get off of the prednisone.
She does not feel that the IVIG is the correct treatment for my type of Myositis (dermatomyositis). She has used it but in cases much worse then where I am right now.
Rixuximab - Has good results but is typically not an approved treatment by the insurance provider and therefore she would need to write a case to the pharmeceutical company to possibly include me in a test. The only problem with that is I might be the one to receive the placebo and I would need to be weened off of the Imuran(azathioprine) before they would consider me a possible candidate. That also means that I would have to allow my condition to get worse in order to see if the new treatment might be better.
Finally, CellCept...she said this would be a lateral move. This medication would replace the Imuran and should have the same results. Not sure why I would want to make a change if the results should be the same but again we are holding off of that for now as well.

The lab work was done and I should receive a call with results in the next day or so. I passed all but one of the strength tests she performs. My neck muscles are showing signs of weakness again. To treat this and prevent weakness in other areas she changed the tapering schedule for the prednisone. I was at alternating doses this week 20 mg one day and 10 mg the next....as of today I am taking 20 mg for the next week every day. Then down to 15 mg for a week, 10 mg, 5 mg, etc...
She was honest with me and although we scheduled my next appointment for eight weeks down the road and lab appointment in four weeks she thinks she will be seeing me sooner because of the pain and stiffness I am beginning to experience. Today, on the treadmill for the first time I noticed the stiffness in my ankles. It took a lot for me to slow down my pace and just enjoy the activity and not worry about how far or how fast I could go in 15 minutes...I can thank my team of walkers for that. THANK YOU.
So, that's where I am right now.
I will keep you posted....keep your miles coming.

klb

Quote for the day: " Wake up with a smile and go after life...Live it, enjoy it, taste it, smell it, feel it." Joe Knapp