I had a triple phase bone scan on my feet a few weeks ago, and the results came back normal with no indication of CRPS. I know that this doesn’t mean that I don’t have CRPS, and from what my doctor says this means I am past the point that it would show increased uptake because this is seen usually early in the disease. I have been emailing with a doctor in Italy because I have been considering going there for neridronate. He said that with my bone scan results, the drug would not be able to taken up and I would see very little or no benefit. Both my doctor and the Italian doctor were surprised that after 10 months of my CRPS duration I would already have a normal triple phase bone scan. My question is, has anyone discussed bisphosphonate treatment with their doctors, and is that the consensus that they won’t work unless your bone scan showed increased uptake of the tracer in the affected site? Has anyone done bisphosphonate treatments with a normal bone scan and had them work? I am confused because the US trial for neridronate is taking anyone regardless of their bone scan results or disease duration. It seems to me there are a lot of people for which this type of drug won’t work. Thanks

Hi MissyJ,

I can't answer to this but You have raised a lot of interesting and concerning points. I just looked at the Italian study and there are a lot of limitations on it. They only took cases with the hands and feet, only four months duration and only abnormal bone scans where the contrast was being up taken.

This really makes me wonder what the heck with the U.S. Study. Sounds like the results will come out weird. Biphosphinates are not without side effects so you hate to see people getting them who can't benefit. I'm wondering if some of us should start emailing the company doing the study. This seems really important for consumers and study participants to know.

Thanks for sharing!

I was thinking that the company doing the trial must know something about the mechanism of action of the drug that would make them think it would work on more people. But the more I read journal articles, they always have the caveat that it works only very early on and with an abnormal uptake in the bone scan. Oh, and the publications also say it doesn't work well with "cold" CRPS. I'm not sure what I have because sometimes my foot is warmer than the other, and sometimes it is colder.
I was just hoping that it would be proven otherwise, because I wanted it to work for me. I may have to accept that I shouldn't pursue this anymore, and hope something else will give me some relief.

I'm going to comment because I'm probably one of the few people who've recently had bisphosphonate infusions for CRPS. My CRPS started abruptly March, 2013. After chasing many other diagnoses, I had a three phase bone scan in Dec, 2013 that confirmed the disease (along with other signs, symptoms and results). After messing around with a pain clinic for several months with no benefit my rheumatologist ordered the Padget's disease protocol for pamidronate infusions (30 mg of pamidronate per day over four hours for three days for a total of 90 mg of pamidronate). This was in May of 2014. I don't know if my bone scan would've still been showing abnormal uptake five months after the first test. However, I did have the normal positive side effects of cramping and having to take calcium throughout the day for a week or so, presumably because my bones where pulling calcium back into the bone from the peripheral blood. The infusions didn't cure me but they did help a lot of things. My rheumatologist has said he would be willing to repeat them but no more than once a year and only if my jaws where xrayed clear of osteo necrosis. He didn't say I needed a new bone scan.

Your question is a good one. The bisphosphonate should shut down abnormal osteoclast activity that's allowing breakdown of bone. I would think the bone scan would detect this.

As for the hot and cold. I think those are old classifications that still get used in the literature. My right ankle, where this all started, can be hot or cold at any given time since the beginning.

Thank you so much for your input and your experience. I wonder if I had done a bone scan early on if it would have been abnormal back then. Maybe there is so much variation with CRPS that someone could have a normal scan early on, and someone else could have an abnormal scan years in. I have heard that as well that it is safe to repeat the infusions once a year, as long as your dental x-rays still look ok.
That is interesting about the hot and cold classification. Thank you