Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

 
 
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Old 08-31-2009, 06:49 AM #13
CZZ74 CZZ74 is offline
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Join Date: Nov 2006
Location: Florida
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CZZ74 CZZ74 is offline
Member
 
Join Date: Nov 2006
Location: Florida
Posts: 422
15 yr Member
Default Thanks Mike, this is new to me.

Quote:
Originally Posted by fmichael View Post
Dear CZ -

I found that the best thing for "deep bone crushing pain" in my ankles has been periodic infusions of Zometa, which has made it go to 40% (or less) of what it once was. That said, it hasn't done anything to speak of for the constricting pain in my ankles, the burning pain and tightness in my feet, the sense that my toes have been worked over by hammers or crampping thought my legs and, sometimes, body. But, the deep bone crushing pain was the worst thing I had going, bar none.

Zometa (zoledronic acid) http://www.nlm.nih.gov/medlineplus/d...s/a605023.html is an improved version of the Pamidromate which has been shown for some time to provide relief from CRPS. See, "Efficacy of Pamidronate in Complex Regional Pain Syndrome Type I," Robinson JN, Sandorn J, Chapman PT, Pain Med. 2004; 5:276-280, full text at http://www.rsds.org/2/library/articl...e_Robinson.pdf The big difference between Zometa and Pamidromate, so far as I understand it, is that the Zometa can be infused through an iv line in 15 minutes as opposed to Pamidromate's 4 hours. [Note: Zometa should never be used be anyone in need of "significant" dental work where it may lead to "jaw necrosis." Accordingly, most good pm docs require pre-clearance from a dentist.]

Unfortunately, in it's FDA approved use, to prevent the uptake of bone material into the bloodstream, primarily associated with multiple meloma, it's dosed at approx. 5 ml. On the other hand, for CRPS it's given at I believe 60 ml. This has been used of late as the basis for my insurance co. to deny reeimbusement for it's use (at approx. $900 every six months) after three years of no questions asked coverage. The matter is currently on appeal, so we shall see what happens.

Finally, for a recent "review" article on the use of Biphosphonates - the broad chemical name for the group of drugs - which has the feel of a "work for hire" (and because it's published in Europe there are no manditory disclosures of "competing interests") see, "Biphosphonates for the therapy of complex regional pain syndrome I—Systematic review," Brunner F, Schmid A, Kissling R, Held U, Bachmann LM, Eur J Pain 2009;13:17-21, full text at http://www.rsds.org/2/library/articl...d_Kissling.pdf. The article goes so far as to question the use of this therapy because it's not in the "current" (1998) guide to consensus practice that predates all but one of the four studies that have found this class of drugs useful, and then suggests that one should never rely on a "mono-therapy" in the treatment of CRPS when the Robinson article - above - makes just that same point!

I hope this is useful.

Mike
Mike, thank you so much for this, I have never heard of this treatment and wil activly research this with the sites you have provided. My pm is very familar with rsd and offers many types of infusions in his office. WE just discussed the ability for him to provide manitol for me via iv for edema in his office, so I know he would provide this for me if he feels I am a canidate. I do have a great deal of trouble with pain in my teeth, the trimengal(sorry about my spellling) nerve, so i do not know if that will be a factor. thank you again Mike. I will post the out come. I see my pm again in 2.5 weeks. Sincerely, cz
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"Thanks for this!" says:
Dew58 (08-31-2009)
 


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