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Clinical trial…a year later.

This week I had my last follow-up for my clinical trial. This follow-up marked one year since I had received the phase three clinical trial drug Neridronic Acid. On the drive home I reflected over the last year.

When I began the clinical trial I could barely walk most days and used a cane to improve my limited mobility. I was barely making it through four hour days of lab and desk work. And by barely, I do mean barely. I struggled to move my right hand without excruciating pain and the slightest touch from my clothing on my right hand or left leg caused a cold, burning sensation combined with the sharp, aching, constant pain that I wouldn’t wish on anyone. I could not stay awake for the whole day no matter how much coffee I drank or how hard I tried. Simply put, my life was not that of a typical 20-something-year-old, but normal for that of someone with Complex Regional Pain Syndrome. A year ago I was struggling to accept my chronic diagnosis but was still determined for my disease to be better treated.

Getting into the specific clinical trial I had my eyes set on was not easy.  It took me months from when I first heard of the Nerdronic acid clinical trial {Huge shout out to my Aunt Sue for finding the clinical trial of “this clinical trial drug that I should look into, it seems to be working miracles”} to get screened, get accepted, and start the course of trial treatment. I’ve since learned of an organization, Find Me Cure, that helps to put patients and healthy volunteers in touch with clinical trials; in short Find Me Cure does the heavy lifting of matching patients with trials that fit their disease.

My infusions during the clinical trial were a real test of my personal faith. For me it was a huge moment where I leaned on God and trusted Him to get me through the pain that was worse than I had ever experienced. I had four six hour infusions over the course of ten days. I’d receive an infusion, have flu-like symptoms late that night and next day, excruciating bone and joint pain the following day, and the day after show up for my next infusion to start the process ALL over.

I did not notice the benefits of my trial treatment right away, or even in the first few weeks of receiving the treatment. I am not a patient person. This was a severe test of my faith and patience, again I prayed and leaned on God to guide me through what I perceived at the time to be a big let down to my husband, family, friends, career, the clinical trial, and the CRPS spoonie community. My CRPS symptoms and pain decreased gradually, barely noticeable from two months-post trial, on. It was only in looking back months at a time that I noticed I had less constant pain, less inflammation, less color changes in my CRPS affected limbs. One year from my clinical trial treatment, I now work full-time at a job I am passionate about, I go on adventures with my dog and husband, I walk almost all days without my cane or any assistance, I go out with friends, I take long car rides pillow-free, I visit family. I still have CRPS symptoms and the occasional pain flare-up, but the symptoms I do have on a regular basis are less severe than they were a year ago.

My clinical trial experience has given me hope that there are scientific advancements happening to better the lives of warriors with chronic diseases.


Additional information about clinical trials and my experience as well:

Clinical trial.

Being a guinea pig {my clinical trial experience}

How to Benefit from Clinical Trials|Full Webinar|

“Now I am able to clean my own house. Who would take this as a blessing?” Allison’s clinical trial experience

NERVEmber Pain: CRPS And The Quest For Better Treatments

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1 Comment »

  1. Alli, we love to hear that you have progressed so well through all of your trials and tribulations. A special hug for Aunt Sue who guided your journey. Wishing you nothing but the best as you move forward. So good to spend time with all three of you this fall in Door County ;) keep up the great progress! Gentle hugs and face licks—Mark, Connie and Sawyer

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