Clinical trial results


#1
Most member on this forum are aware that i was a patient on the Exenatide trial running at UCL Queens Sq Central London. Well yesterday was results day and throughout the trial i had been convienced i was on the active drug. Well much to my surprise i was actually on the placebo. My team in Lincoln were as convinced as i was so no one is more surprised than I. BB x

#2

wow we ,just goes to show that mind over body thing !


#3

 

That's unbelievable BB. How did you feel when you were taking the placebo drug, did you still feel and act as if you had PD, I did'nt see your video.

Then how did you feel when they told you it was a placebo drug. What  exactly were they trying  to prove and why in the first place and what meds should you have been on and what was the name of the placebo drug.

Sorry about all these questions but it sounds fascinating

Sheila


#4

Hi I felt stronger and my walking improved I still felt the PD and showed symptoms but 3 weeks after stopping what i now know was the placebo the distonia got worse. I felt gobsmack although I always knew it was a possibility. 

It leaves me open and eligible to go on a 3 rd faze trial as i have not been on the active drug.

It was a double blind study which means the computer decided which drug I had and even the lead researcher on the trial did not know what I was on, they could only obtained that info if something went seriously wrong. They have to have so many on the active and the same on a placebo because then if those on the active drug really improved and us on the placebo did not then it was clear there was a benefit  to that drug. I did get one thing right though they assessed us 3 monthly and I have always felt my PD like Gus has been aggressive because at week 0 my UPDRS motor score was 28 at week 60 four weeks after stopping the drug my new score is 53 the lower the better.. So even though I wanted to be wrong about that bit I have proven to be right again. Don't know what it was called but It is something that breaks down naturally in our systems. To be honest I feel a bit Peed off. I supposed the good that has come out of it is if I get accepted for the DBS I only knew about the hospital in London and the lead researcher because of the trial. And he is one of the top Neurologist Surgeons in the UK. So hears hoping I find out in November if it is offered to me.

 

BB xx


#5
Do you think this will have a affect on being accepted for dbs

#6

 

Thanks for that info BB - hope it all goes well and you are offered the DBS. I mentioned about a friend of mine who had it done in April we are now end of September and still not out of the woods, it takes a good 12 months they reckon before she will feel the benefit of it. Hope it has'nt put you off!

All the best and take care - Sheila

P.S. Hope your other problem is getting sorted, did write a long post back to you then lost it all!!


#7

Fair play to you BB 

your very honest thanks for sharing your story good luck lassie 

ian xx


#8

Hi Gus no I don't think it will impact on their decision when I started the trial they graded my condition on the UPDRS format they always use. The lower the number the better, Start level was 28 end of trial is 53 and lead researcher did point out to me that is a heavy progression.

BB xx


#9

Thanks Shefinn & Ian, i should find out now on Oct 12th that the appointment with the whole team.

 

BB


#10
I can say i got good benefits straight away but as you say shefin its took me about 18months to get really great results you have to keep pushing yourself ie mean ajusting meds and keep getting reprogrammed and stress really has a factor meaning when you feel good don't over do it as what i did 8 times thinking i could carry my job out as if nothing happened to me

#11

 

Yea Gus it's not an easy road to travel down. My friend is really on a downer, so you really you have to think positively about having the DBS done. Do you feel a whole lot better now, do you think it was worth having it done?

Sheila


#12
100% without it i could not walk eat dress or toilet. Myself

#13
That is the plan for me although when i am on i am really on when i am off i am really off. So even though i thought i was on active drug i don't mind now knowing i was on the placebo. That trial lead me to the neuro surgery centre of excellence and to the neuro surgeon i am under and in my opinion he is at the top of his field. BB x