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Old 03-30-2017, 11:21 PM
haywired haywired is offline
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Join Date: Oct 2016
Posts: 7
5 yr Member
haywired haywired is offline
Junior Member
 
Join Date: Oct 2016
Posts: 7
5 yr Member
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I thought about trying it. There is actually a clinical trial going on for a new bisphosphonate. it's run by axsom labs/ axsom therapeutics.. it could be spelled axsome.

ultimately i got cold feet, because of the possible side effects (necrotic jaw, fun! but -- this is more common in osteoporosis patients who are on it longer and at higher doses. And, not good apparently to take them if you are considering getting pregnant.)

I still wonder about them, though, because though i have relatively low pain and at the time I thought it was going into remission (i have oddly low pain for this diagnosis -- if anyone out there is is like me with all sorts of visible / palpable physical changes to your limb / skin/ tissue / joints but NOT the unbearable pain part, i'd love to hear from you.)

nowadays things seem to be regressing or flaring, and a few weeks ago i had new deep bone pain (transient, not unbearable at all, but unpleasant and enough to make me wonder about how healthy the bone in my foot is through this journey) so i started thinking about them again. I think i would want the triple phase bone scan before deciding to take them.. just because they are kinda weird drugs and the scan would convince me, perhaps, it was really necessary to spare my bone/joints.

it has been my experience , also, that most docs in private practice don't want to write for them. but that study i mentioned is being conducted at many locations across the country so you could look into it. they are trying to measure whether treatment with the study drug reduces pain..

hope this helps


Quote:
Originally Posted by Imahotep View Post
I guess it's used extensively but somehow its existence escaped me.

How about pamidronate?
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RSD ME (03-31-2017), Shay08 (04-03-2017)