I'm many weeks into the trial. I've had some GI difficulties. Anyone else experienced problems?

I've had no obvious problems so far(coming up to wk 12). What are your difficulties ?
I take the dose at Midday, after eating.
I was told not to drink too much since your liver has to process the drug, so usually no alcohol until after 6pm.
I believe the suspension liquid is essentially the same as coconut oil, ?

Diarrhea and reflux have been the main problem. It was a major problem in the beginning, but I was told to take it with the largest meal and that has helped a lot. I take it while eating now which helps. I didn't know about not drinking too much. I'm in week 10. I read that the vehicle (i.e. suspension liquid) is medium chain triglycerides. There is a comparison to coconut oil on wikipedia.

I was accepted into the trial almost two weeks ago. Haven't seen any changes yet. My doctor advised not to expect any changes for at least 30 days. I take my dose each morning with breakfast at 7:00am. The first dose had me thinking I was taking liquid ExLax :-) but I quickly learned to eat 1/2 my breakfast take the dose then finish the remainder of breakfast. Blueberry yogurt with extra blueberries & muffin or toast seems to eliminate the GI issues. Limiting liquids at breakfast also helped. So my morning coffee is now at 9:00am after daily work out at the Y.
DonLee I'll send you a PM

I think Greg said it but it bears repeating...many in our community aren't aware of trials...honestly, many physicians (even movement disorder specialists) don't ever mention the need/opportunity for patients (and controls) to participate in trials during visits.

Slow recruiting means slow progress and increasingly, the low expectations by a sponsor become a meaningful deterrent from working in PD at all. We are continuing to education patients and physicians about this significant need and the willingness/information disconnect. Access to information and channels for action are a big, big challenge. This is one of the reasons we launched fox trial finder (which has recently added search functions for Canada, UK and Australia to the existing US tool). Below you can link to FTF and search for trials that might be a fit for you (interventional -- ie, therapeutic and/or observational -- ie, no treatment but critical research questions). Please consider establishing a profile (we are eager to demonstrate to pharma that there are more PD patients out there willing to participate than they assumed) so that you can be alerted about future trials that may be a fit.

Here is a link to FTF:

https://foxtrialfinder.michaeljfox.org/

Here is a link to the specific Cogane trial (where you can learn about participation criteria and connect with coordinators at sites if appropriate):

https://foxtrialfinder.michaeljfox.org/trial/2424/

Best, Debi

Debbie,

Do you mind if I copy/paste this over at the NPF Young Onset forum? There are so many more de novo patients there and if I recall correctly the Cogane trial criteria wants pre-ldopa patients. I will also promote the Biomarkers project. They are a good group of people but maybe due to denial or shock or something seldom engage in the realities that we obsess over on this side of the fence. I honestly do not even think they know that clinical trials are imperative to finding better treatments. It's hard because they don't identify with that yet; in other words, they are not desperate enough.

Thanks for including us!

Laura

I learned about Cogane soon after I was diagnosed 5 years ago, thought it sounded promising, and really hoped to get into the trials, but of course they only got started after I no longer qualified. Very frustrating. Would love to hear how trial participants are doing.

I did join Fox Trial Finder last year, but have yet to find a good match for me.

Anybody in this trial with positive results? Please update us. Any talk of
Phase III?


David

I finished my 6 month trial 3 weeks ago, with the last follow up visit next week.

Phytopharm had problems recruiting the requisite trial numbers, and finally filled the last places a month or so back.

Allowing 7 months for the latest intake to complete the trial, results are now due out late 2012/early 2013

What did you notice? Improvement, status quo, or decline....or anything else? I know it would be subjective. I know you may have been taking the placebo. Still, we would love to hear your personal, subjective thoughts on how you felt while taking whatever it was you got, sugar pill or the actual drug. Thanks!