Exenatide

[Gwennie1]

Has anybody in the UK been prescribed exenatide? If so any help would be greatly appreciated.

Thank you

[Patrickk]

If you are looking for an angle to get it prescribed this might work:

[cut-and-paste]

According to a very sensitive test, Homeostasis Model Assessment for Insulin Resistance (HOMA-IR), 2/3 of Parkinson’s patients are supposed to be insulin resistant. IR may be treated with Bydureon (Exanatide). Just an angle that might get us one step closer to getting Bydureon.

cureparkinsons.org.uk/news/...

Here's my usual cut-and-paste:

Bydureon (a.k.a., Exenatide), a repurposed Type 2 Diabetes drug is now in third-stage trials in UK for stopping Parkinson’s in its tracks — results expected 2023. Testing — mice, open label, double blind — has been going on since 2010 and it has been positive every time.

scienceofparkinsons.com/201...

[snip]

I believe I've read here that Covid slowed down the third stage study set up -- only 30 subjects recruited so far out of prescribed 200 -- fully funded though -- possibly (this is just me now) pushing results back from 2023 to 2024.

[JustJeff]

So i recently requested to go on the trial for this medication because i thought i was an ideal candidate being diabetic type 2 and having PD.I was refused because im diabetic no explanation why ........beggars belief

[BootsOn in reply to JustJeff]

I was reading the list of exclusions recently and saw that so didn't bother to volunteer myself. I guess it's because, if you are already on diabetes medication, they wouldn't want to change it because of the extra monitoring involved in keeping your blood sugar stable. Frustrating though.

[Horseriding4]

Is it available yet...i thought it was still on a trial??

[Parkinsonjisung in reply to Horseriding4]

The trial won't finish for at least 3 years but a doctor could in theory still prescribe it. Most won't. Note there can be some weight loss issues associated with it.

[Horseriding4 in reply to Parkinsonjisung]

Hi. Thanks for this. What symptoms do you have...My husband just had walking freezing ....nothing else would you believe. anita

[Parkinsonjisung in reply to Horseriding4]

More bradykensia and rigidity n some slight tremor. Does your husband take c/l?

[Horseriding4]

Hi. What is c/i.....he take dopamine....200 x 3 times per day. Anita

[Parkinsonjisung in reply to Horseriding4]

Ya, its caridopa/levodopa. Its called due to all the brand names which ppl take.

[VivaceLargo]

Yes, I have. I saw the phase2 results, and asked for it to be prescribed ‘off label’ I have been taking it for 11months. Initially fantastic improvement in walking and energy levels, now dropping off.

[Gwennie1 in reply to VivaceLargo]

My Hysband has been refused a prescription as it is still being trialed.Where do you live?Will you carry on taking it?

[VivaceLargo in reply to Gwennie1]

Hi Gwennie1 I live in South Yorkshire, my specialists are in Sheffield. I knew I would most likely get a ‘no because it’s still being trialled’ from the team too, even requesting it ‘off label ‘

( I.e not for for it’s original licensed indication, of type 2 diabetes. Just for the record any Consultant can prescribe a drug ‘off label’ if he or she considers it to be clinically beneficial to you. It’s a common practice )

I researched GLP-1 effects on the body, what side effects I could expect, as a non diabetic (safety & tolerability ) then looked at efficacy in the phase 2 data.

I concluded it was a Gold Standard Trial, (RCT - randomised, placebo controlled trial, peer review, published in a highly reputable journal.

Results were statistically significant ( ie benefits due to exenatide not to chance )

I concluded I couldn’t wait 3 years + for

Phase 3 multi centre replication of results.

So I initially wrote to Professor Foltynie (lead clinician) expressing interest in being prescribed exenatide and requested an appointment to discuss my suitability.

I travelled to London for my appointment and he is now supervising me, ( I was not able to join the phase 3 trial as I would not have been able to travel in my dystonic ‘off’ state)

Professor Foltynie presented a very balanced view of the phase 2 results, and now prescribes it for me ‘off label’ I plan to stay on it indefinitely. (Or as long as it is safe to do so)

My results were initially highly beneficial, I was able to walk significantly better and for longer. I had more energy. At my 6 mth review the benefits were still there.

Side effects wise, I expected appetite reduction, slower bowel transit and weight loss. I drink loads of water to compensate for potential constipation. I lost 2 stone in 6 months, and a further 1/2 stone in the last 5 months. I’m now 12 stone 9, I’m comfortable with this and able to exercise more easily. I like cycling on my e bike.

Good luck with your enquiries about exenatide.

Kind regards

[Nb11 in reply to VivaceLargo]

Do you still think your seeing positive results?