Exanatide trial – updated
I got involved in trials back in 2013 when a friend of mine saw a leaflet asking for volunteers at her GP practice.
Phase 1 was a not blinded proof- of-concept and I ended up in the control group that didn’t take the active drug. This allowed me to be part of the double-blinded phase 2 trial in 2014/15, where volunteers were randomised into injecting Exanatide or a placebo once a week over the course of a year. I did feel a bit nervous at first, this being my first delve into the world of research, but the research team put me at ease quickly. And with Exanatide already being tested & approved for diabetes, the risks were minimal.
The trial required me to inject myself once a week into either thigh or belly, and once you get over sticking a needle into yourself, that’s fine. Every 3 months I travel to the UCL in London for a half day assessment. This required me to stop my usual Parkinson’s medication for 24 hours to allow the research team to see me both in off and on state. They conducted a series of test checking motor functions and cognitive abilities. I also had regular blood and urine tests as well as a DAT scan and spinal fluid test at the start and finish of the trial period.
Overall a very positive experience, it was great having an extra few pairs of hands and eyes taking care of me for a couple of years.
See also this video of Dr. Dilan Athauda explaining the background and history of how Exanatide came into play for Parkinson’s. At the very end Dilan ventures further into the brave new world of drug repurposing, i.e. using medication already tested and approved for other illnesses, e.g. diabetes for use in treatment of other diseases such as Parkinson’s. International experts have compiled a list of 7 promising candidates and I’ve been lucky enough to be involved in trials for 2 of these (Exanatide & Simvastatin).
Just wanted to give an update on my personal journey as Exanatide is currently moving into a third trial phase, involving more participants over a longer period of time.
About a year after phase 2 trial ended back in 2016, the results were very promising, indicating that patients with the active drug showed significant improvement in motor symptoms over the trial period and also at the checkpoint 2 month after trial end, compared to the placebo control group. As it turned out, I had been on the active drug and my test results were in line with the overall assessment showing improvement beyond trial end.
When it came to discussing next steps in my personal journey with Parkinson’s and managing my symptoms with the right cocktail of medication, it was decided by my neurologist and GP that I would benefit from receiving Exanatide on an ongoing basis. I’m having quarterly blood tests to check for any unwanted side effects, but so far so good. When I think about this, I’m probably one of only a handful of PwP who are taking this leading-edge medication to fight their disease – and that is quite a humbling thought.
© Ulli Funken 2019, 2021