It sounds almost too good to be true, but this is the claim being made by a team of specialists in Italy.
Complex Regional Pain Syndrome is a notoriously incurable illness. Every patient tries a battery of treatments: medication, physiotherapy, hydrotherapy, spinal blocks, spinal cord stimulators, pain management techniques – I could go on and on. For some, often those diagnosed very early, these treatments are enough to force the illness into remission and their pain stops. Unfortunately for many others, like myself, whilst some options might help to a certain extent, life becomes a balancing act of attempting to function whilst keeping the pain at a vaguely bearable level.
I have tried almost all of the treatments listed and for a long time I hoped one of them would cure me from the crippling, constant pain I experience. Sadly, whilst some helped a bit (and some actually made things worse) there has been nothing that has come close to my dream of being restored to the condition I was in prior to my injury.
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Now, for the first time, it looks like the fantasy of a real cure might actually be coming true. Specialists in Italy have been conducting trials with neridronate infusions for CRPS sufferers. And the results they report are startling: their study shows 100% of patients becoming free of CRPS symptoms, and, crucially, remaining completely CRPS-free at a one-year follow-up.*
So what is this wonder treatment and how does it work? Neridronate (also known as neridronic acid) is one of a group of medicines called bisphosphonates. These drugs bind to the surface of bones, and stop bone breakdown. They’re commonly used for the treatment of osteoporosis and bone cancers. One of the early symptoms of CRPS is bone loss, causing x-rays of the affected area to appear ‘cloudy’, and severe, long-term CRPS can cause bone deformities.
In this trial, 82 CRPS patients were randomly divided between placebo and infusions of neridronate. Nobody knew if they were getting the real drug or not. Patients were assessed on pain scores, use of painkillers, swelling and limb function at the start of the study, at day 10 (after therapy), then after 20 and 40 days, with a final follow-up a year later. At the end of 40 days, those patients who’d had placebo were also given the opportunity to have the real neridronate infusions. **
After 20 days, it became apparent that neridronate was providing pain relief. Over the next 20 days, those who’d received the real neridronate infusions described a constant and significant decrease in their pain. By the end of 40 days, 73% of the neridronate patients had a reduction of more than 50% of their pain. Neridronate also produced significant improvements in swelling and movement of the affected limb. Finally, of 68 patients taking painkillers at the start of the study, 100% of the neridronate patients were able to stop their pain medication. When the placebo group were later allowed to have the real neridronate infusions, they showed the same positive results. And most stunningly and crucially, a year later none of the patients were reporting any CRPS symptoms at all. **
So what form does the treatment take?
It involves 4 intravenous infusions of 100mg neridronate conducted over 10 days. Patients are hooked up to a drip in hospital and monitored by medical staff over a few hours whilst the drug goes directly into their bloodstream. This treatment is available in Italy right now. According to the Italian team, there are “no undesirable complications” and they claim to have cured “a very good number” of CRPS patients completely. They expect that patients who have the treatment will see a “drastic” improvement in their CRPS symptoms “over the next 2 months”. ***
So what’s the catch? Well, unfortunately there are a few. Firstly, neridronate is only licensed for the treatment of CRPS in Italy. It’s used elsewhere in the world as a treatment for osteoporosis, and early stage clinical trials for CRPS are beginning in some countries, but we’re still probably at least 10 years away from it being available to sufferers anywhere outside Italy. The rest of us can get it if we can afford to pay for it, but it’s not cheap; thousands of euros of medical expenses, plus the cost of travel and accommodation in Italy for the duration of treatment.
Secondly, that startling study, the one with the 100% success rate? Well, that only included patients who were in their first few months of CRPS, and it only looked at those with CRPS type 1. In this type of CRPS there is no discernible injury to the nerve. If you have a nerve injury and develop CRPS, it is classed as type 2.
No published papers
The Italian team freely admit that those who’ve had CRPS for longer may not experience the same results but they claim that the treatment is “still effective” even for those who’ve had CRPS for years.*** There are no published papers on trials involving neridronate with patients who have longstanding CRPS, but there are papers on other bisphosphonates that suggest that the treatment might benefit them. It’s just likely that the effect will not be as pronounced as the “cure” patients with younger CRPS might experience. None of the five published trials included patients with CRPS type 2. Also, no-one has published any data on how these patients have got on after that first year period. It may be that the fantastic benefits they’ve experienced don’t last forever. **
It’s also possible that some might need 8 instead of 4 treatments to achieve a positive outcome, or repetitions of the infusions, multiplying the cost of what is already a pricey therapy. There are also some contra-indications and side effects, meaning it’s not safe for everyone. ***
So, all in all, is this really the cure for CRPS? Well, in the last five years, I’ve read everything I can get my hands on about this disease. I’ve not come across anything else that even gets close to the results of this study. To document a 100% improvement and crucially, maintain that improvement at a 1-year follow-up is genuinely astounding.
Sadly though, I don’t think it’s a total cure for CRPS just yet. For anyone in the first few months of CRPS Type 1 with significant disposable income, get on the phone to Italy right now. However, if you’re in the early stages you have a pretty good chance of remission anyway. And more crucially, most of us don’t get diagnosed in the first few months. CRPS is rare and largely unknown and most go through a long period of ruling out other causes for the pain before anyone even mentions this disease to them.
Still, I think this study is good news for CRPS sufferers everywhere. Sure, it’s not the whole answer just yet. But I think it might be the beginning of one. Who knows where the next ten years of research could take this treatment? The biggest problem with this study is that it doesn’t address the long-term CRPS sufferers, the ones whose lives have been turned upside down and have suffered their uncontrollable pain for years. But I am in contact with some patients with long-term CRPS who are in Italy right now undergoing this treatment. It will be fascinating to see how they get on and I wish them all the luck in the world. Strike that, all the luck in the universe. I’ll be updating this blog in the future when they’ve recovered and had some time to ascertain whether it is of much benefit to them. I sincerely hope, as much as I’ve ever hoped for anything, that in a few months’ time I’ll be writing about the massive improvement they’ve experienced. Fingers crossed and watch this space.
Varenna M, Adami S, Rossini M, Gatti D, Idolazzi L, Zucchi F, Malavolta N, Sinigaglia L
Treatment of complex regional pain syndrome type I with neridronate: a randomized, double-blind, placebo-controlled study.
Rheumatology (Oxford) 2013 Mar;52(3):534-42. doi: 10.1093/rheumatology/kes312. Epub 2012 Nov 30.
Treatment of complex regional pain syndrome type I with bisphosphonates
OsteoRheumatology 2014 RMD Open 2015;1:e000056 doi:10.1136/rmdopen-2015-000056