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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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07-23-2007, 06:09 PM | #1 | |||
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In the "Spread Thread" the other day, I included the following information about Zometa, which can be linked to here: http://neurotalk.psychcentral.com/sh...t=24167&page=2 (There are a couple of articles attached to that post which are worth checking out.)
In conversation with Frogga on that thread, I made the point that it didn't work for me until the third monthly infusion, and that the drug is not for everyone, specifically for those needing significant dental work. However, response to her additional inquiries I have done some more work. Turns out that Zometa is in fact a new and improved pamidromate, approximately two to three times more effective than the original. That and the infusion time is a fraction of the original model: Bisphosphonates"Adjuvant analgesics in cancer pain management," Lussier D, Huskey AG, Portenoy RK, Oncologist, 2004; 9(5): 571-91 at 583. A copy of that article is attached. Moral of the story: accept no substitutes. That, and it might be worthwhile talking to your doctors about Fosamax and Boniva as well. (I am sending the article on to my pain guy for what it's worth.) Mike Last edited by fmichael; 07-23-2007 at 10:27 PM. |
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07-23-2007, 07:24 PM | #2 | |||
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A quick follow up. Attached is the U.S. prescribing information for Boniva. Unfortunately, the Fosamax and Zometa sheets are too large to post, but you can download them here:
[Zometa] http://www.pharma.us.novartis.com/pr...pdf/Zometa.pdf [Fosamex] http://www.rocheusa.com/products/Bon...jection_PI.pdf Especially for folks with RSD-induced osteoporisis, I think it's important that people get on this stuff sooner rather than later. Mike |
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07-24-2007, 11:01 AM | #3 | ||
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mike, could you explain exactly how you are better? less pain? less swelling? just wondering what the improvements are for you. this is very interesting information. thank you, joan
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07-25-2007, 01:59 AM | #4 | |||
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Hi Joan -
Zometa has substantially relieved what may have been the single worst symptom I had: that a spike was being driven - crucifixion style - through the ankle joints of both feet. It also appears to have produced maybe a 50% reduction in the sense that someone was taken a hammer to my toes. (The rest I've been able to control with Xanax (Alprazolam) a benzodiazepine that does wonders for shooting neuropathic pain a lot of folks experience, even though a couple of studies the literature didn't find empirical support for the claim, but that's another story.) That said, Zometa has given me no relief of any kind from really nasty compression pain around my ankles, which is often triggered by stress. And the swelling is still about the same. Nor has there been any overall improvement in cramping, although a fair amount of Baclofen seems to work more effectively than had Zanaflex, and since I'm no longer practicing law, I put up with a little amnesia as the price of admission. And I'm blessed not to have sensitivity to light touch, so I can't speak to that one. By coincidence, I just came across the following abstract tonight, following up on Anne Louise Oaklander's work a year or two ago, tying small fiber neuropathy to CRPS: "Concordance between epidermal nerve fiber density and sensory examination in patients with symptoms of idiopathic small fiber neuropathy," Walk D, Wendelschafer-Crabb G, Davey C, Kennedy WR, J. Neurol Sci., 2007 Apr 15; 255(1-2): 23-6:What's interesting in this context is that in the almost 22 months I've been on Zometa my "pin-prick sensitivity" has grown markedly worse, suggesting that even though although the underlying disease may be growing more entrenched, at least some of my symptoms have improved. Bottom line: the stuff seems to work really well, at least for "deep bone pain." Mike ps A copy of "Concordance between epidermal nerve fiber density, etc." article is now attached. Last edited by fmichael; 07-25-2007 at 12:10 PM. |
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08-09-2007, 06:41 PM | #5 | |||
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Just saw my pain dr. at U.S.C. this morning for another Zometa infusion. He tells me that there's every reason to believe that Zometa and other bisphosphonates work directly on the nerves, where not every RSD patient experiences a loss in bone density: I certainly did not.
He also tells me that based upon what he understands through the literature and speaking with colleagues, although his personal experience in treating this patient population with Zometa is somewhat limited, that these drugs should work for burning RSD skin pain and touch sensitivity. In any event, this is something that those of us fortunate enough to not need major dental work in the near term should be discussing with our doctors. (And to the extent everyone else can get their dental work done before trying the stuff, so much the better.) Mike |
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08-09-2007, 07:52 PM | #6 | |||
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Heya..
Very interesting - will forward to my pain guy.. who knows.. he might get the point!!! Especially as with my last set of X rays and scans it looks like I will need something along that line... and looks better than Fosemax... Thankyou so much! Love Frogga xxxxxxxxx |
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