Exenatide Trial

[Parkinsonjisung]

Anyone take part in the exenatide trial? What's the current status. Must be pretty much finished at this stage.

[azure64]

i completed the exenatide trial august 2022. since the trial was finished and closed at my location, i was informed (months later) by the researchers after my completion that i had the higher active dose the entire time. unfortunately, my tremor progressed while on it. i was started on sinemet 25/100 three times daily with moderate success on my tremor and remarkable success on my bradykinesia and general ‘weird’ muscle feeling.

sadly, they pretty much told me it didn’t seem to be working for the patients they followed.

onward and upward!

[ProudParkie2017 in reply to azure64]

I was also a part of that trial - it made me so sick and I was on the lower dose! I really did not see much difference while on the trial and my research nurse said that they did not meet their endpoint goals.

I also started CL/L which has helped a lot. The buntanetap trial also helped me significantly! I got my arm swing back

[AkunaMatata in reply to ProudParkie2017]

Hi  azure64  ProudParkie2017 . Do you know which study you were part of specifically?

If I understand ClinicalTrials.gov correctly, there's 6 Exenatide trials:

* Phase 1, 2018–2021, Florida only, 5 participants, done by the University of Florida

* Phase 2, 2010–2013, UK only, 40 participants, done by UCL

* Phase 2, 2014–2016, UK only, 60 participants, done by UCL

* Phase 2, 2020–2021, South Korea only, 99 participants, done by Peptron, Inc.

* Phase 2, 2020–2023, Sweden only, 60 participants, done by Karolinska Institutet

* Phase 3, 2020–2024, UK only, 194 participants, done by UCL

There was also a study of NLY01, a modified form of exenatide (see: beta.clinicaltrials.gov/stu... ), from 2020 to 2023 with 255 participants. It was conducted with sites all over the US (+ one site in Toronto, Ontario). The sponsor was Neuraly, Inc. It indeed failed: parkinsonsnewstoday.com/new...

Did you participate in the NLY01 trial by any chance?

[ProudParkie2017 in reply to AkunaMatata]

I was part of neuraly and was on the lower dose of the drug. It made me sick as a dog and I saw no benefit.

Annovis buntanetap is a different story…. Saw huge benefit but won’t officially know for another month or so if I was in the actual drug. I’m hoping for open label expansion.

[AkunaMatata in reply to ProudParkie2017]

Thanks. Sorry to hear that Neuraly's NLY01 did not work for you. But it's good to know at least that it was not the Exenatide trial and that there's still some hope for Exenatide... Wait and see...

[azure64 in reply to AkunaMatata]

i was on the higher dose in the NYL01 trial.

[JCRO]

It would be disappointing if Exanatide came to nothing after all these years.

[Parkinsonjisung in reply to JCRO]

Yes. Very disappointing.

[azure64 in reply to JCRO]

agreed, but that looks to be where it’s headed ☹️