Quote:
Originally Posted by Imahotep
I guess it's used extensively but somehow its existence escaped me.
How about pamidronate?
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I had pamidronate under the protocol for Paget's disease. It was a three day infusion. I had complications with pulse, BP, low spO2, nausea, flushing and blurring of vision. They had to stop the infusion for several hours two of the three days until I stabilized. There were moderate side effects after but I handled it.
It's been three years nearly. I was in pretty bad shape in general when I went in. My sister, who took me and cared for me afterward seemed to think it helped a lot. I was not even in the shape to tell. (I have a lot of other problems.) One thing I remember it did stop was the bone pain and it seemed to help the charlie horse type cramping that was extremely painful.
I seem to be having a flare right now and for the first time since the infusions, I'm feeling some bone pain again. I'm looking at another one in the near future possibly. I guess I'd rather do neridronate since it's a newer, hopefully better, more effective formula so I might wait until that gets fast tracked through the FDA for approval for CRPS. I don't meet the criteria for the study. But if the bone pain gets bad enough, I'd do pamidronate again.
ETA I don't think bisphosphonate is used extensively in the US for CRPS outside of this recent neridronate study. I don't recall running across anybody else on forums who's had pamidronate infusions. There are some people traveling to Italy for neridronate now, where it's already approved. I don't know how they're doing after. Pamidronate helped some types of pain but did not help the significant edema in my entire right lower quadrant. I was also already on a high dose of steroid throughout the infusions which probably blunted some of the adverse effects.