[catra121]

After two weeks of being high dosed on Vitamin D, I went in to get my levels rechecked last Tuesday and this morning I got the call that my levels were high enough to qualify for the drug study! I should be able to start either Wednesday or Friday (depending on how quickly she hears back from the study coordinator). Fingers crossed that this provides some much needed relief!

The drug is called neridronic acid and it's a biophosphate (I think there are several different ones out there being tested). It will be 4 infusions total over a 2 week period (each appointment lasts about 6 hours). Everyone gets the meds in this study...no placebos. My doctor said at my last appointment that of the 12 people who he'd had go through the study so far, 9 had gotten relief. Even if it's just a little...ANY relief would be a huge plus.

I'll try to keep everyone updated on how the study goes...and I'll have my mom take some pictures while I'm getting the treatment to document the whole process.

[CRPSbe]

Originally Posted by catra121

After two weeks of being high dosed on Vitamin D, I went in to get my levels rechecked last Tuesday and this morning I got the call that my levels were high enough to qualify for the drug study! I should be able to start either Wednesday or Friday (depending on how quickly she hears back from the study coordinator). Fingers crossed that this provides some much needed relief!

The drug is called neridronic acid and it's a biophosphate (I think there are several different ones out there being tested). It will be 4 infusions total over a 2 week period (each appointment lasts about 6 hours). Everyone gets the meds in this study...no placebos. My doctor said at my last appointment that of the 12 people who he'd had go through the study so far, 9 had gotten relief. Even if it's just a little...ANY relief would be a huge plus.

I'll try to keep everyone updated on how the study goes...and I'll have my mom take some pictures while I'm getting the treatment to document the whole process.

I hope it works for you, catra! I truly do.

I had my infusion run for 4 hours at least, each time, back in the day. I think with me it was either pamidronate or alendronate (I can't be sure anymore).

GOOD LUCK!!!

[catra121]

Thanks so much! Fingers crossed there's at least some relief. I'm not expecting miracles...but at least the knowledge that there are new things to try...that I haven't tried EVERYTHING gives me some hope for the future.

[RSD ME]

That's great news Catra! I am praying that these infusions will help you. I look forward to hearing how things go. Best wishes to you. Hoping you find some pain relief from these infusions! Hugs.

[catra121]

Thanks! I just found out I start treatments tomorrow morning and a week from tomorrow I will be getting the last treatment. All this waiting and then BOOM...get it all done FAST. I'm all for it though. I have physical therapy in about an hour and then will have to cancel my next 3 appointments because of the treatment...but I don't think that will be an issue and hopefully I will have an easier time with PT after the treatment is over.

[St George 2013]

So very happy for you and pray this helps !

Keep us posted.

Debi from Georgia

[catra121]

Originally Posted by St George 2013

So very happy for you and pray this helps !

Keep us posted.

Debi from Georgia

Thanks! I will definitely keep everyone updated. I'll probably start another thread just for updates and info so it will be easier for people to search later if needed.

[Becca71]

That's so exctiting. I can't wait to hear how it goes for you, because I'm also considering infusion with one of the biophosphonates.