did anyone here tried bisphosphonate therapy?
 

Hi! I heard that Paula Abdul's rsd got better with pamidronate. did anyone ever tried this or alendronate or fosamax, infusions or by mouth, boniva or any of those bone medications? Of maybe you took them for osteoporosis? I have a doc who could give me one of these as there were some studies suggesting they can be helpful. I am a little concerned though because I heard people can get osteonecrosis of the jaw

in any event. I am just continuing to do research because i haven't found a good knoledgable doc who i can really trust. Did dr. s or dr. k or other docs recommend these? I can[t wait to get better!

many thanks again for your replies! i don't feel so lonely since i found this forum. thank you for the community you have built here!!!:)

I had 2 IV infusions of pamidronate in 2004.

It made me very very sick with an allergic reaction that caused blood vessels in my left eye to explode leaving a tremor in my eye and a very serious case of tinnitus. I lost 20 % of my hearing because of this treatment not to mention the constant loud buzzing ringing that will never go away. It is still considered experimental and not enough info is available about the side effects. At the time this happened to me my doctor found one other patient report of the same side effects. He subsequently stopped giving this drug.

Warm wishes.

MsL

Well, with respect, I have to come out come out the other way, at least in terms of my own experience. My friend MsL had an earlier version, known as Pamidromate. I have used without incidence a newer form, brand name Zometa (Zoledronic Acid). While at one time there was an FDA warning linking it to possible atrial fibrialtions, that was withdrawn on 11/12.09. http://www.nlm.nih.gov/medlineplus/d...s/a605023.html

I have been taken infusions of Zometa for the past 2-3 years, and while it by no means hasn't taken care of everything, it has resolves the worst of my deep, "bone crunching" pain. However, good pain mangt. docs require a written pre-clearlance from your dentist, where people who have required major dental work, e.g. root canals, within a few months of taking it have a tendency to develop something evil called jaw necrosis. In addition, it can only be given to people with normal kidney functions, so a basic metabolic blood panel is typically taken and analysed within 7 days prior to each 15 minute infusion.

As I understand it, the initial treatment starts out with three monthly infusions: I didn't get relief until the third one. Thereafter, boosters are given every 6 to 12 months, as needed. Hope this is helpful.

Mike

Hi Mike,

I wish I could have taken the newer versions of this because in the end yes I did have some relief from the deep bone crunching pain for a brief period of time following the pamidronate infusions. But after that experience I'm best to stay away from all forms of bisphosphonates.

Perhaps the reason my TMJ jaw pain escalated was due to the pamidronate infusions? I guess I'll never really know as it has generally gotten much worse since the onset of my RSD in 2002.

I'm glad you got some relief with no serious side effects.

warm wishes.

MsL

My dear MsL -

Then again, maybe I've just been lucky, where I see from the list of known side-effects (in the link posted above) that use of Zometa may also be associated with presumably temporary symptoms of "rash, hives, itching, swelling of the eyes, face, lips, tongue, throat, hands, arms, feet, ankles, or lower legs." For all I know, I would have been a candidate before what appears to have been something of a T1/T2 cyktokine shift, when I got CRPS and my well documented allergies to stinging insects suddenly disappeared!

That said, your occular experience sounds tuly beyond the pale. :(

Mike

It was definitely very scary especially when they were insisting it was just a migraine and I knew better.

It's no fun to be that very tiny rare statistic on the the receiving end. I don't wish it on anyone.

Be well my friend.

MsL

Has anyone else out there with crps/rsd tried bisphosphate therapy with positive or negative effects? I have not yet tried this treatment.
thanks!

I have had crps (symptoms in all 4 limbs) about 9 months now. And I have seen this related recent link:
http://neurotalk.psychcentral.com/thread180581.html

I've been looking into this treatment extensively for my girlfriend. I referenced an article (and Mike gave the abstract) in the earlier post to which sallysue refers. The study looked very promising, but it was only conducted on those with acute CRPS. However, there are other studies that show benefit to those with chronic CRPS, although the benefit may not be as pronounced as with those who have had CRPS a shorter time.

I have noticed a dosing issue in the articles I've read as well. Better results tend to come from several higher doses administered intravenously within a short period of time. The best results came from the study mentioned above in which 100 mg of neridronate was administered 4 times over 4 to 10 days. The authors stated that the bioequivalent dose for those in countries where neridronate is not available (which seems to be everywhere outside of Italy from what I can tell) would be 90 mg of Pamidronate 4 times in the course of 4 to 10 days. I'd imagine that side effect profiles would be higher with this dosage, but none of the 82 patients in the study who all eventually got the treatment (the control group after a period of 40 days) experienced any major side effects. A year later, according to the study, none of these 82 patients were referring symptoms of CRPS (it is important to keep in mind that none of these patients had CRPS for longer than 4 months though).

Also, in regard to Zometa, I've been reading about this and Zometa is much much more powerful than any other bisphosphonate. As a result, infusions take a shorter time, but there is also some evidence linking Zometa to higher risks of side effects versus other bisphosphonates (but then again there is evidence linking Pamidronate, which is stronger than most bisphosphonates but weaker thant Zometa, to higher side effect risk than weaker bisphosphonates such as clondronate). In the end, these are all considerations you should bring up with your doctor if you pursue this option, but if you do keep us posted!

Thanks!

Dear cjai - Thank you very much for the info. I am working on getting medical clearances for this - for an infusion sometime in Jan. I do not know which bisphosphonate he plans to use. My condition has progressed very rapidly.