[daylilyfan]

I just saw this the other day, and I can't remember if it was linked on one of the FB RSD groups or if it came from RSDSA.

It is one of the most comprehensive documents I have seen on CRPS/RSD.

It is long, and I have just skimmed through a lot of it - but did read most of the therapy section.

they mention calcitonin. Can't afford the calcitonin now full time - but after reading this, I will get a script for a couple bottles to have on hand because I will be needing some dental work and cataract surgery later this year. The way they recommend calcitonin before invasive procedures is new to me.

Complex Regional Pain Syndrome (Reflex Sympathetic Dystrophy)
by Dennis D. Dey, MD, PhD; and
Robert J. Schwartzman, MD
module updated 2012-07-06

https://www.edsers.com/uploads/RSD.pdf

[loretta]

Thank you so much for this information. I'll read it completely. loretta

[Neurochic]

I mentioned this on another thread where this document was also linked but in case anyone doesn't see it, after the date of the document, calcitonin nasal sprays had all of their regulatory approvals revoked across the whole of Europe.

All of the clinical trials for the nasal sprays demonstrated increased rates of cancer risk which is why it lost its regulatory approvals. Canada is supposedly reviewing the situation but the FDA don't seem to have decided to ban it.

It's something to bear in mind for those in the USA who may consider the drug, especially if you already have other risk factors for cancer or have previously used this type of drug.

[debbiehub]

Originally Posted by Neurochic

I mentioned this on another thread where this document was also linked but in case anyone doesn't see it, after the date of the document, calcitonin nasal sprays had all of their regulatory approvals revoked across the whole of Europe.

All of the clinical trials for the nasal sprays demonstrated increased rates of cancer risk which is why it lost its regulatory approvals. Canada is supposedly reviewing the situation but the FDA don't seem to have decided to ban it.

It's something to bear in mind for those in the USA who may consider the drug, especially if you already have other risk factors for cancer or have previously used this type of drug.

On page 9 he says the movement disorder is treatable but how??

Thanks,
Debbir

[Neurochic]

Sorry Debbie, its nothing that you won't already have heard of and I assume have already tried.

The only reference made to treatment of CRPS related movement disorders made directly in that document is in section 6.3 which only mentions treatment with baclofen and tizanidine. As I'm sure you know already, these drugs are generally not that effective for most people who have CRPS related movement disorders but they have been tried and some papers have written up their effects.

For many folk, baclofen seems to be helpful like a muscle relaxant (similar to the effect that diazepam would have but without the same dangers of rapid addiction, physical dependence and tolerance). If you have mixed tone (ie some muscles that are normal or weak and others that are tight) or muscles that constantly spasm on and off, it often just makes everything too floppy to be useful. Administration by intrathecal pump can help some people but usually those with extensive fixed dystonia where the muscles are constantly 'locked' in high tone over a large part of the body. it comes with all the dangers of invasive surgery and accidental leaking or other technical failure.

Unfortunately, these oral drugs and and the others like Dantrolene (which works at the level of the muscles rather than on the CNS) are largely the extent of the treatment options for CRPS related movement disorders. Some people with dystonia find botox injections effective but it isnt any good where it is generalised throughout your body. A very small number of people with dystonia will respond to levodopa but, like in Parkinson's disease, you have got to persevere and take it for three months minimum in order to be able to determine if it will work. People with CRPS related dystonia typically test negative for any of the known genetic defects which cause the majority of cases of dystonia.

[NJPineyChick]

I use tizanidine and flexor patches. Is this helpful to anyone else?