Peter,

I'm in week 23 of Cogane Trial. No changes yet. Must be on placebo or low dose.

Have you seen any changes?

Lee

Hi Lee

I'm week 8 next week

Well I saw my GP (general doctor ) today for the first time in a while and she remarked that I seemed less rigid. In myself I feel better, and the other day I noticed I was swinging my left arm (not consistently as I tend to favour it ).
An abscess that has been persistently needing antibiotics every 3 or 4 months for the last 3 years, seems to have calmed down.
It's hard to make an objective assessment, as you are aware of yourself on a daily basis, rather than comparing how you felt a month or two back.
So far no bad side effects

How about when you compare yourself to 6 months ago ?

Peter

Hi Peter,

I really had not seen much change until a couple of weeks ago. Lip tremor has gotten a little worse. Recently started taking citalopram. My GP said citalopram could be causing this so I'm slowly getting off of it. Hopefully that will slow down the lip tremor. I was hoping for more from Cogane, but you never know. I guess I will finish the trial & go from there.

Keep me posted on your experience with Cogane. Hopefully it will work for you. They are already talking about Phase III from what my Dr said.

Lee

I'll be delighted if it just slows or stops the progression, any reversals of my PD symptoms would be a bonus

I just wish more new PDers would volunteer, so that the trial schedule and the clinical results aren't delayed. I'd love to see it moving quickly on to Phase III general trials for all.
Peter

Same here. They are very picky about who they let in the trial. At Emory in Atlanta, they turned down several people for various reasons. They did increase the trial locations to get more people.
Hopefully they will get through & go on to Phase III.

Where are you from?

Sorry for the delay in replying, for some reason I cannot log onto here on my home PC

I'm from the UK, living to the south of London - my trial is through a major London teaching hospital, unfortunately I'm currently the only one on the trial there, and I found them and volunteered

I live in Albany, Ga in the USA.

Is the Cogane working for you? I finish up next week. Ready to start on meds.

Does anyone have any sugestions for first time meds?

The problem is, most new PDers are not aware that this trial even exist. From my 12 years of experience with PD and the doctors involved, new patients simply are not informed of clinical trials until it is too late. By that I mean they have already started other medications or they stumble across the information after the enrollment period has lapsed or the trial has been discontinued.

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