Originally Posted by MissyJ

Well, I have been reluctant to post an update because I just kept hoping and hoping I would eventually see some improvements. I am three weeks past the first infusion, so I am having to come to terms with the fact that either I got the placebo, I got the drug but the dose I received wasn’t high enough, or it didn’t work on me because of my particular CRPS or duration.

I really don’t want to deter anyone from doing the trial, or discourage anyone who is already doing it. But, it has been quite a roller coaster of emotions. I did end up having some side effects the day after the first infusion, so I had my hopes up. Last week I had two days of pain being down slightly, and got my hopes up again. But now I’m back to bad pain. I don’t regret having done it because I had to at least try.

I do wish I would have paid more attention to the mg of neridronate administered in this trial. It is not near the amount given in Italy. Is that because of the FDA? Will that affect how people respond to the drug in this trial? I don’t know. I have an appointment with my pain management doctor tomorrow, so we’ll see what he thinks I should do next. It’s possible I may have to leave the trial if we decide to go on ahead with other treatments right now. (You have to keep other meds stable for 3 months to remain in the trial). If I leave the trial, my doctor can request which treatment I received from the study director if we need it. Which we will if we decide I should go for a pamidronate infusion. I’ll let you know what happens next. Thanks for checking in.
Missy