Exenatide & medical cannabis

[Ianfrizell]

Hi all

This is a link to my vlog about my doctor’s change of heart over prescribing exenatide for me, and an event in Parliament to present the latest expert knowledge about medicinal cannabis.

youtu.be/X3Azl2xsXr8(Not working as expected?)

Cheers,

Ian

[FMundo]

Ian,

Speaking based on laws in the U.S (and I suspect similar laws apply in the U.K.) doctors are allowed to write prescriptions "off label" for medications approved for other illnesses for Parkinson's Disease. This is called "repurposing" of drugs.

There are several drugs now that proving themselves to be "neuroprotective" in Phase III Clinical Trials but which are being denied to PwP's who would benefit from taking them by doctors. I consider this to be a form of malpractice.

By the time that exenatide is formally approved as a treatment for Parkinsons, those people with late onset Parkinsons who are reading this all will be pushing up daisies. Further, I think that doctors on both side of the pond should give consideration to this fact, the strong evidence that this drug can be beneficial to their clients and to help them survive longer.

Frank Mundo

[Ianfrizell in reply to FMundo]

Frank, you hit the nail on the head!

[Bridielena]

Ian, Bridielena again from Australia.

I informed you not so long back that I had tried Exenatide weekly injection for 7 months.

My Neurologist wanted me to have a 2 month break which is up end of July.

I’m not sure how I feel and have compromised any benefit there may have been by deliberately dropping one other drug ......Sifrol ER because of its side effect of lightheadiness/dizziness which plagued me daily. Silly move because l literally froze giving me cramping feet and calves. Couldn’t move.

After one day off it put myself back on but still not back to where I was prior to the drop.

I want to try Exenatide again at least for another 6 months. I have no idea of what length of time I would need to be on this drug though. It’s all a guessing game.

Read today where, by 2065 yes 2065, there will be 1 million Aussies with PD. I read that to mean there won’t be any discovery of anything to help us prior to that date. This from a scientific institute in Australia. Won’t mention names.

Why am I trying ? By then even my grandchildren will be senior citizens.

Bridielena

[Ianfrizell in reply to Bridielena]

Hi Bridielena

I think that exenatide is very difficult to judge regarding results which is why I have booked an appointment with my neuro to assess me on the UPDRS - then I can judge progression in 12 months time...

[M1tz1]

Sorry you're having all this frustration over the Exanatide prescription, Ian. I hope something can be done promptly. If the cannabis is approved swictly and proves efficacious, maybe you won't need the Exanatide. Praying that one way or another you'll get some relief.

[Ianfrizell in reply to M1tz1]

unfortunately the cannabis only provides symptomatic relief whereas the exenatide has the potential to halt the progression of PD...

[Kia17]

Thanks Ian for sharing your video.

[gingerj]

Thanks for the video I think I'll talk to my neurologist too

[andynest]

Thanks for the video. Very helpful!

[FMundo]

The medical model for Parkinson's is all wrong. Parkinson's is likely not a single disease with a single source. Different people respond differently to drugs. We should approach finding a solution first by conceptualizing the malady as a "syndrome" and not a single disease. The solution lies in running clinical trials on homogenous groups of people (identified as such by detailed evaluation genetically and by studying the etiology of their disease).

I would like to see a lot more pressure placed on MD's to do "off label" prescription of some of the drugs that are shown in Clinical Trials to be effective in extending lives of patients, in cases where its the patient's choice to take a risk.