I guess it's used extensively but somehow its existence escaped me.

How about pamidronate?

I have not tried biphosphonates but I did ask my doctor about them. He said some people have had good results but there are side effects. My present treatment is helping but I keep looking for other options in case I stop responding to this treatment or start having health issues that would prevent its continued use. There are side effects to everything.....

New U.S. Clinical Trial of Neridronate | RSDSA

biphosphonate CRPS - PubMed - NCBI

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.

I think I had pamidronate, if I remember correctly (or was it alendronate?) - I can't remember. In IV form, 5 consecutive days - hospital stay, many many many years ago. It didn't do a thing for my CRPS as a whole. My legs were too far gone.

Normally you get this treatment once a week, but I was in such bad shape that they made it into 5 consecutive days of treatment. And they let it drip for 4H otherwise the side-effects would be too bad.

It was used in Belgium fairly often at the time (now I'm not so sure), and I had to consult a rheumatologist for it. I doubt pain specialists do this protocol.

I asked my pm dr about trying neridronate but he said that he didn't prescribe it in his practice for rsd. I hop the trials for it turn out to be successful for treating rsd so that maybe I can then try it to help manage my rsd pain someday.

I thought about trying it. There is actually a clinical trial going on for a new bisphosphonate. it's run by axsom labs/ axsom therapeutics.. it could be spelled axsome.

ultimately i got cold feet, because of the possible side effects (necrotic jaw, fun! but -- this is more common in osteoporosis patients who are on it longer and at higher doses. And, not good apparently to take them if you are considering getting pregnant.)

I still wonder about them, though, because though i have relatively low pain and at the time I thought it was going into remission (i have oddly low pain for this diagnosis -- if anyone out there is is like me with all sorts of visible / palpable physical changes to your limb / skin/ tissue / joints but NOT the unbearable pain part, i'd love to hear from you.)

nowadays things seem to be regressing or flaring, and a few weeks ago i had new deep bone pain (transient, not unbearable at all, but unpleasant and enough to make me wonder about how healthy the bone in my foot is through this journey) so i started thinking about them again. I think i would want the triple phase bone scan before deciding to take them.. just because they are kinda weird drugs and the scan would convince me, perhaps, it was really necessary to spare my bone/joints.

it has been my experience , also, that most docs in private practice don't want to write for them. but that study i mentioned is being conducted at many locations across the country so you could look into it. they are trying to measure whether treatment with the study drug reduces pain..

hope this helps