I qualified for the drug study!!
 

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!!!

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.

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.

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.

Just awesome news !
 

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.

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.

I will definitely let you know! I'll try to update on the whole process and then, of course, how well the treatment actually works too. :)

My thoughts and prayers are with you too Catra. As you put your hope on the line...

booklover

I'm praying this will help you find some pain relief Catra! Hugs.

Hi Catra! So very excited for you. I will keep you in my thoughts and prayers that your treatment will be successful. :hug:

I don't mean to burst the bubble, but for me the bisphosponates in such a late stage (diagnosed almost 3 years in to it), did 0 for me, yes it helped the osteoporosis part of the RSD get better and I no longer felt like walking in a swamp (with such frail legs). It got a little "firmer".

But maybe I was a lousy candidate - at least they tried and gave it their all, as I got 5 infusions over the course of a week, one right after the other - yeah, that bad!

Anyway, I wish you good luck with the treatment!!!

I don't expect miracles and I haven't had much luck with anything else...so it's worth a shot. That's the thing with CRPS...there's not treatment that works 100% with any of us. All we can do it try the stuff we feel comfortable with and hope for the best. For me...if the treatment doesn't make me worse (outside of maybe some flare ups from the IVs and sucH) then it's worth trying. Like...neurontin works well for you...and I got ZERO relief from that and a small amount of relief from Lyrica. This condition sure does a number on us and it really stinks that part of the reason it's not well understood is because we all react so differently to things. What works for one doesn't work for all...and it's discouraging. All that to say...there's no bubble to burst and I appreciate that you always share your experiences honestly. I learned pretty early on not to get my hopes up looking for a miracle cure all...but to still keep my hopes alive that maybe the NEXT thing will bring me some relief. :)

Very true!

I hope it all works out for you! :D

Any relief yet?
 

Hoping you've found some measure of relief :hug: