Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 08-09-2017, 03:18 PM #1
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catra121 catra121 is offline
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catra121 catra121 is offline
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Join Date: Jan 2010
Location: Illinois
Posts: 1,785
10 yr Member
Default Biophosphates Drug Study

I started the drug study today for neridronic acid...a biophosphate that they are studying for treatment of CRPS. I believe there are several studies out there and some are for different biophosphates...but sure how much they differ from this one. I am officially the 156th person to participate in this particular study.

For the past month or so I have been taking Calcium/Vitamin D supplements for this study. I take two pills, twice a day. My vitamin D was low...so they high dosed me for 2 weeks on vitamin d to get it above 30 so I would qualify to participate in the study. I am supposed to take the Calcium/Vitamin D supplements twice daily for 14 months as part of the study.

Today was the first of four infusion treatments. I had to be fasting when I got there because they drew some blood right away. The infusion itself lasts 4 hours...there were several surveys I had to fill out first when I got there and they did 3 EKGs before the infusion along with taking vitals, and then did the same after the infusion was over.

So far...only side effects from the treatment are that I am tired and have a bad headache (and that could be because I got almost no sleep last night too). They keep saying flu like symptoms are pretty common though.

I brought an audio book with me and my cross stitch to keep me busy during the infusion and that went well. I had to set the stitching down a bunch of times because of the headache...but I was glad I had the audio book to listen to because I could just close my eyes for a few minutes and rest a bit before picking the stitching back up.

My left hand where they put the IV...that HURTS...like...hurts worse than IVs and blood draws normally hurt. I'm not sure why. When they took my blood pressure after the infusion was finished...I thought I was going to die from the pain in my hand (no joke...it felt like someone drove a spike through the hand).

All in all...today's visit lasted 6 hours. I go back Friday and they said it should be a little shorter because I won't have as many surveys and things to do next time. They did say that by the third treatment I should start seeing some positive effects from the drug but not to expect anything before then.

Will update Friday after my next treatment.
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