Hey all,
Since it seemed that the CRPS monster was spreading into my left foot, at first just the heel and then more along the bottom of the foot, my Doc (insurance, not w/c) ordered a sympathetic block ASAP as that is the window when they are most effective. Hopefully to halt the progression going on in this new spread.

Now, of course,my back and butt cheek hurt, but its only a couple days out.

But what is interesting is the doc that did the procedure said he could also offer SCS (not interested ) or Bisphosphonate infusion, which can help with pain AND bone loss. The info he sent was pretty promising. I remember some people here use it, right? Info? Side effects?

Anyway, right now just focusing on recovering from this event.

Oh and the workers comp drama too of course.

In Belgium once you've passed stage 1 (calcitonin), you enter the next phases of treatment which if you go the route of rheumatology are bisphosphonate infusions. My case is such a bad one that at that point in time when they first saw me, they immediately hospitalized me and gave me 5 infusions over the course of a week. Normally, you only get one, spread out if there is a need for a second one. So that should tell you a bit of where I'm at.

But that didn't do much either (except help with the bone loss).

So I have had to live with it.

Best of luck to you. In Belgium it is much more of a treatment in the sense that it is practiced here for decades already and that it seems to now only be coming to the US. Odd, that.

Hi Becca,

I am sorry to hear about your spread and the WC difficulties adding to your stress. I hope you are recovering well from the block and that it proves helpful.

There is a ton of info on Google Scholar about CRPS and bisphosphonate. The summaries of treatment options I have looked at before indicated strong evidence for effectiveness. It may be most helpful early on but you are early on in the spread right? They work through both altering bone absorption and affecting inflammatory mediators from what I've read on their action in CRPS.

There are a couple of trials going on with these drugs so the body of evidence is growing. I'd look at side effects overall for the drug for all disease process if it was me. Your doctor should give rates for these. The most serious is osteonecrosis of the jaw. Another article I read indicated this side effect seems be most prevalent in people who had dental extractions in a certain time frame of getting infusions. You might want to get a dental check up if this concerns you.

Oral bisphosphonates are also used with CRPS if that feels like something you'd rather try and your doctor recommends.

I hope you find relief soon. I'm sending soft hugs and healing love,

Over here bisphosphonates come second in line, after calcitonin. Calcitonin syringes are considered first-line defense (well they used to be, as some university hospitals are shifting their interests to the "Dutch approach"), and bisphosphonates are for late stage, recalcitrant RSD.

I personally haven't seen mention of bisphophonates for late stage recalcitrant CRPS.

Here is an article summary by M. Varenna who is responsible for the Italian research that brought us neridronate. Varenna states that in most studies these drugs are useful early on and actually may not work as well in long standing disease. Neridronate is currently in US safety trials.

Bisphosphonates in Complex Regional Pain syndrome type I: how do they work? - Abstract - Europe PMC

It is my understanding that calcitonin use has fallen out of favor. The FDA here has prohibited it from being marketed due to cancer risk.

Becca, I hope you get what you need.

[QUOTE=Littlepaw;1245286]I personally haven't seen mention of bisphophonates for late stage recalcitrant CRPS.

Here is an article summary by M. Varenna who is responsible for the Italian research that brought us neridronate. Varenna states that in most studies these drugs are useful early on and actually may not work as well in long standing disease. Neridronate is currently in US safety trials.

Bisphosphonates in Complex Regional Pain syndrome type I: how do they work? - Abstract - Europe PMC



Littlepaw,
This is my recollection as well. I was right at a year when I was diagnosed and it was clear from my research that I needed to get the bisphosphonate treatment then or never. I actually investigated going to Italy, but the truth was I could not do it. I couldn't make the 45 minute drive to RI to see Dr.Chopra, never mind an international journey.

It was an article in rheumatology in the nineties, I think.