Exenatide PD trial


#1

Hello all,

With all the excitement over vaccines and GDNF, don't over look the Exenatide PD trial, which is being carried out at the National Hospital for Neurology and Neurosurgery (part of the University College Hospitals Trust) in London. This diabetes drug showed promising results in a recent open trial and following on from this a level 2 double blind trial is now recruiting.

You can read more about it on the project website here:

http://www.ucl.ac.uk/exenatide-pd

You don't have to live in London to take part, if you live within a couple of hours from London, the project will pay the costs for you (and your partner/carer) to travel to London and, on the six occasions when you need to be seen unmedicated in the morning, they will put you up in a great little "boutique" hotel (which is owned by University College Hospitals).

Its an already approved drug so the side effects are well established (a common one is weight loss, which for many of us might not be a bad thing!). There's no surgery involved, though it is quite an intensive programme.

So, if you meet the criteria, why not volunteer? How do I know all this? Because I'm volunteer no: 9 and happy to answer any questions.

Cheers

AndrewJohn

 

 


#2

Good luck with the clinical trial Andrew . Fingers x for more promising results , I am newly diagnosed but I think it's great what you are doing . I hope to get involved with research myself in the future x


#3

Good luck with the clinical trial Andrew . Fingers x for more promising results , I am newly diagnosed but I think it's great what you are doing . I hope to get involved with research myself in the future x


#4
I was on this trial turns out I was taking the placebo what about you??

#5

are you still tking the drug bb, I have continued to take it for over a year. Still no results of the trial through yet.I too was on placebo.


#6
No completely stop at end of trial but Defoe notice my window I whilst on drug trial had got smaller. Whilst taking trial drug in moring i had roughly 1hr before Distonia would kick it at wash out it had reduced to about 5mins then leading up to DBS op it would attack between 2 and 5 times during the night it was almost like it knew what I was having done like it was trying to wind me up. Op was 7weeks ago tomoz and since probes installed apart from switch on day when I had to be unmediated I have had not 1 single Distonia attack yipppppeeee no stiff painful joints and no tremor. I could not be happier with this result. BB xx

#7

I'm completely in awe of those who partake in trials, but I'm confused as to why after being informed the drug you have been taking is a placebo, that you continue to take for a further year.


#8

Ali p


not the placebo , the exenatide drug(bydureon)


#9

Ah, ok, apologies, it's all so confusing.


#10

tell me about it


#11

So as active drug has produced good results they are applying for funding for a 3rd faze trial you was on 2 faze trial and not on active drug you may well qualify. I was on placebo so will be applying I was also the last person to be signed up on the 2nd faze.

3rd faze if funding granted will be much bigger about 300 people.

 

BB xx


#12

i've been on  2mg exenatide now since feb 2016 one injection a week


#13

bb, where did you get the info about thre trial? did you go to london last week


#14

Yes i did and asked that question directly to professor F myself. To qualify you have to have never taken the active drug before. So placebo users will be ok unless excluded for another reason.

BB xx


#15

i wonder how many (like me) got it prescribed after the trial finished.


#16

Hi Roberto,

I'm curious to learn your experience.  Do you think it's helping?


#17

Not many Roberto as i understand xxxx


#18

that is difficult to judge, how bad would i be without it? I suppose I would need to be evaluated by those who ran the trial and probably another brain scan. i certainly don't feel that much better , off meds. but don't feel much worse on meds than a year ago. I should hear from the other trial at Newcastle soon, i won't disclose the drug name until i ok it with the study leader. It is suppose to stay in the gut longer and give more on time.


#19

Hopefully this will help you mate xx


#20

Roberto,

The new data seems to show you made a good move.   Maybe this will be the wedge that starts cracking this thing open.