Exenatide for Parkinson's Disease

[Ianfrizell]

Hi all

This is a link to my latest vlog, about obtaining a prescription for exenatide.

youtu.be/i42M2e9bi2k(Not working as expected?)

Cheers

Ian

[Bolt_Upright]

Thank you for sharing Ian. I don't know if you can draw any conclusions from a single burst of progression. I can imagine the PD doing damage to the brain in such a way that even if the exenatide was working, things might still snap.

I imagine an automobile run hard with no maintenance for years. Even once you start treating it right, there are still parts that were already on the edge and almost ready to break. Those things near the edge were eventually going to break.

The question to me would be: Are the things further from the edge going to continue moving towards the breaking point? I don't know.

I am not a doctor. I have a high school degree. Good luck. I really appreciate your videos.

[Astra7]

Hi Ian. Thanks for doing the vlogs. It’s a shame that you went backwards on the exenatide, but I hope you decided to give it another 3 months. There isn’t much to lose other than some money and the inconvenience! There also doesn’t seem to be much else on the horizon. In the video your face was a touch less expressive and your voice a tiny bit more slurred (although fine by the end) than the last video I saw - which was when you were building a wood shed.

How much cannabis do you take and do you take dopamine meds? I have just got a script for CBD oil with a minuscule amount of THC in it. Hoping it will help stop me throwing myself off the bed at night!

Thanks

[jimcaster]

Hi, Ian! We haven't heard from you for awhile. Welcome back!

[eschneid]

Good to see you Ian. Hope it pays off for you if continued...

[amykp]

One thing to remember about exenatide (or, for that matter, ambroxol, which I take because I have a GBA mutation) is that these are not symptomatic treatments--they are meant to slow, possibly stop, and only very possibly reverse the long term, overall course of the disease. What I believe that means is that you would be very unlikely to see ANY day to day difference. You could take a monster dose and still have a terrible day, or forget a dose and have a great day.

Imagine the medicine is helping your neurons grow back. ( I don't specifically know that these are, but, for example...) A nerve cell might grow like 1/4 inch per week? month? or something, right? You wouldn't see improvement for a year. Even then, the "improvement" might be that you haven't gotten worse. Or, you are not as bad off as you would've been if you hadn't taken any.

It's funny, I read somewhere someone exclaiming she took her first dose of ambroxol and felt great that day. "It's working!" she said. IMHO it was like a flag: Placebo effect! Because, based on what Ambroxol is supposed to do, no way.

I think the same is true of exenatide. So my point is: don't give up!

[kevowpd in reply to amykp]

Yep. There's a reason the phase 2/3 GLP1 trials are going for 2 years. You need 2 years to determine if it did anything.

That said, it's not inconceivable that an injectable diabetic drug could have some other non PD related day to day impact on your wellbeing.

[amykp]

Ha ha, that’s true, and I suppose if you had a cold ambroxol would make you feel better as well. Actually, thinking on it I DID have a chronic cough that I think improved almost immediately.

[ianpur]

Hi, Ian. I'm a 52 yo, 18 months into my PD diagnosis. I really would like to obtain exanatide. Would you be able to forward me the details of the neurologist who prescribed this for you so I could contact them for a private consultation. Hope you don't mind me asking. Thank you