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

Attached Files

Boniva - prescribing information.pdf (190.8 KB, 159 views)

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

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:

Quantitation of epidermal nerve fiber (ENF) density is an objective diagnostic test of small fiber neuropathy (SFN). For a diagnostic test to be clinically useful it should correspond well with clinically meaningful physical findings. We performed a retrospective analysis of the concordance between foot ENF density and clinical findings in all patients seen at our institution with possible idiopathic SFN who underwent skin biopsy for ENF density determination. We found a high concordance between reduced foot ENF density and loss of pinprick sensitivity in this patient population. Our findings indicate that ENF density determination is a clinically relevant objective test in patients undergoing evaluation for possible SFN.

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.

Attached Files

Concordance between epidermal nerve fiber density.pdf (150.6 KB, 228 views)

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

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

I spoke with my PM doc about this Mike and he is hip to this.
He is going to look into this exciting treatment for RSD.

Although not an option for me for several reasons I am really glad it is working for you

Talk soon

GnP

mike, thank you for the specifics on the pain control. i asked because so many people have such different problems. this sounds like it could be helpful to many. i'm so glad to hear you are getting some relief. joan