In November of 2017 I was finally accepted into Grüenthal’s neridronic acid clinical trial for diagnosed CRPS patients. [More on the discovery and excruciating waiting period here: Clinical trial.]

This clinical trial has been a vulnerability of sorts for me. It’s been an experience I’ve put off writing about for awhile. It feels too high stakes. One on hand I feel that the clinical trail gives me and other warriors hope that CRPS may have a “cure”; on the other if this trial does not work for me I feel that I’m out of hope, I’ve let other CRPS warriors down, I failed, I’m never going to “get better”. Anytime since the trial that I have a bad pain flare-up I feel that I have let the clinical trial, myself, my fellow warriors, my friends, my family, my co-workers, and career down.

In spite of the vulnerability I am going to share my journey in a clinical trial.

My husband drove me 100 miles + as the crow flies, about 3 hours with traffic, to Grüenthal’s clinical trial for nerdionic acid for CRPS patients 4 times in 10 days for 6 hour IV infusions of neridronic acid and then around once a month for short 1 hour follow-ups. The driving sucked.

The IV infusions of neridronic acid went smoothly. My chest port was not able to be used due to the possible safety implications; I was okay with that.

The evenings and immediate days following the infusions were absolute hell. I know bones don’t have nerve endings and you can’t technically “feel” them. However, I absolutely swear I could feel every single bone in my body. And each one ached more than I know how to describe. Each bone and joint was extremely reluctant to move. I swear if I looked in a mirror I’d only be a skeleton.

That was all that was left of me.

Knowing that I was going to have bone pain to the point where I was a skeleton going in for subsequent treatments after the initial infusion was one of the hardest things I’ve ever done in my life. I wanted to drop out. I wanted to walk away from a trial I fought so hard to be a participant in. I wanted to walk away from a potential cure.

My husband, my rock, kept me on track. He kept me as comfortable as possible with pillow, blankets, distractions, and encouragement.


So far I can confidently say I’ve had less crps pain flare ups. And when I do flare up the peak pain isn’t as bad, it isn’t a 10/10, and I don’t swell up as frequently. The results were not immediate. I’m not the worlds most patient person. This has been a trying time for me to wait and wait and wait. It has been gradual and often I have doubted the progress.

I’m still doubting, waiting, but most of all hoping. Hoping for less pain and that this may be a cure, not just for me but all the warriors suffering.

7 thoughts on “Being a guinea pig {my clinical trial experience}

    1. I received a notification recently that incapacitating bone and muscular pain along with flu-like symptoms have been determined to be official side effects of neridronic acid. These have been determined by this trial and others in the past.


      1. This is great to hear your journey and gives us some hope that there is a treatment looming ahead that sounds promising……even if it only reduces flares and pain levels; that’s better than nothing.
        Keep us updated and best of luck despite the boring driving xx


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