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12-13-2011, 07:12 PM | #1 | ||
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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 |
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"Thanks for this!" says: | sim00 (12-16-2011) |
12-15-2011, 07:08 AM | #2 | ||
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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
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Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less, in human beings of whom they know nothing” Voltaire |
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12-19-2011, 07:43 PM | #3 | ||
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Hopefully they will get through & go on to Phase III. Where are you from? |
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01-03-2012, 09:05 AM | #4 | ||
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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
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Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less, in human beings of whom they know nothing” Voltaire |
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01-04-2012, 03:59 AM | #5 | ||
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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? |
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01-04-2012, 09:16 AM | #6 | |||
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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.
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"You can't fight City Hall, but you can pee on the steps and run." --Gary North |
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02-14-2012, 07:39 PM | #7 | ||
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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 |
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02-15-2012, 08:30 AM | #8 | ||
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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 |
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"Thanks for this!" says: | krugen68 (02-16-2012) |
02-15-2012, 11:10 PM | #9 | |||
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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 |
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"Thanks for this!" says: | krugen68 (02-16-2012) |
02-18-2012, 02:31 PM | #10 | ||
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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. |
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