To be or not to be...

To be or not to be a guinnea pig? That is the question.

On Friday I received the call I was hoping for. The Rimstudy at Froedert Hospital called to gather additional information from me. This doesn't mean I am the qualified participant that they are looking for but it does mean that they are considering me. I should receive in the mail today or tomorrow a consent package to review. Once I do that, I will call to set up an appointment which will likely be mid-July. They will do muscle strength tests and lab work to see if I qualify. Until then, I have made a commitment to keep my prescriptions all the same throughout the study. That means that the tapering of the prednisone has now ceased and I will remain at 12.5 until further notice.
Briefly, this is what I know about the study.
If they chose me, week one I will receive an infusion. The infusion is done at Froedert and it is preceeded by IV doses of Tylenol and Benadryl to offset any adverse side effects. The infusion will take six hours during which time I will be hooked up to monitors and be resting in a hospital bed. I might be a little tired because of the benadryl but that should be it. Week two, I will get another infusion (same as above). Then I will have weekly lab work done and a month later I will get another infusion, followed by another infusion the next week and then just monitoring via lab and muscle tests and possibly another muscle biopsy. She promised the muscle biopsy would not be as bad as the last one, which, if you don't recall absolutely sucked.
Two of the infusions will be the real thing, two of the infusions will be a placebo.

I will let you know when that leg of the journey begins.

This coming Saturday, Emma's Brownie troop has scheduled a family walk at the Audobon Nature Center. The girls will be walking and talking and in the end we will have more miles to add to the journey to Denver. I feel very blessed to have so many people supporting this Myositis Awareness campaign in so many different ways.

Well, that's all for now.
Thanks for checking in.
Make today WONDERFUL.

klb