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Being a guinea pig {my clinical trial experience}

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.


Outcome:

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.

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5 Comments »

    • 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.

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      • 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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