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Old 08-08-2017, 05:32 AM
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CRPSbe CRPSbe is offline
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Location: Belgium, Europe
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CRPSbe CRPSbe is offline
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Join Date: Mar 2009
Location: Belgium, Europe
Posts: 832
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Quote:
Originally Posted by catra121 View Post
After two weeks of being high dosed on Vitamin D, I went in to get my levels rechecked last Tuesday and this morning I got the call that my levels were high enough to qualify for the drug study! I should be able to start either Wednesday or Friday (depending on how quickly she hears back from the study coordinator). Fingers crossed that this provides some much needed relief!

The drug is called neridronic acid and it's a biophosphate (I think there are several different ones out there being tested). It will be 4 infusions total over a 2 week period (each appointment lasts about 6 hours). Everyone gets the meds in this study...no placebos. My doctor said at my last appointment that of the 12 people who he'd had go through the study so far, 9 had gotten relief. Even if it's just a little...ANY relief would be a huge plus.

I'll try to keep everyone updated on how the study goes...and I'll have my mom take some pictures while I'm getting the treatment to document the whole process.
I hope it works for you, catra! I truly do.

I had my infusion run for 4 hours at least, each time, back in the day. I think with me it was either pamidronate or alendronate (I can't be sure anymore).

GOOD LUCK!!!
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All the best, Marleen
=====================
Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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