Hi Rory. Sorry if this sounds like a stupid question. Have you thought about taking the cough medicine mentioned? A small personalised trial so to speak. And is it safe to take. Even if you don’t have a cough?
The dose being tested for PD is 8-9 times higher than the maximum for cough. Its possible to import it from Europe withouts prescription but the challenge will be to get enough
Sorry if this sounds like a "stupid answer", but a 75mg 1-0-0 dose (standard for cough) seems to be dramatically effective at halting the progression of PD symptoms (and coughs) in a small personal trial involving no placebos, no high doses, and no arts graduates. Of course it will be good to have the optimum dose confirmed by a proper trial, but in the meantime why not just go ahead and import it?
Went to the first of such meetings ten years ago — Exenatide was the hope, as you mentioned - it worked so well for a friend of mine on the trial that he got (eventually - a long word in healthcare) it prescribed.. I may pop over to Europe (coughs) & get my throat sorted ..
I registered for the trial and I sent off my sample for the Gene testing approx 8 months ago. Since then I haven’t heard from the research team apart from the fact that the gene test results are taking longer than expected ☹️.
I’m now considering taking Ambroxol as I can buy it in Spain where we often spend time at our holiday home. The big question is, what dose should I consider taking?
However, there’s a very big downside - I would be excluded from the trial.
But 5 years is a long time to wait and if there’s a possibility that I could benefit from this drug now then it’s maybe worth considering. I’m sure many others are thinking the same and may have already started to Ambroxol?
Rory, as always I appreciate your even-handedness but agree that the glacial pace of these trials and reports is discouraging. Approval by 2030 even seems optimistic! I live in the San Francisco Bay Area, and wonder if one has to be within the UK and part of the national health service to be considered for the trials.
I am hoping to participate in this trial not just for my potential benefit, but also for my children and grandchildren who might have inherited the GBA mutation. The delays have been frustrating but I understand the need to ensure the trial tests what it sets out to test as safely as possible. I suspect that medical research trials are underfunded and understaffed, which probably doesn't help when dealing with the necessary paperwork.
Irene - the researchers encourage to go to pdfrontline.com where you can register for both the trial and for genetic testing at the same time, if you wish.
Hi Rory. Sorry if this sounds like a stupid question. Have you thought about taking the cough medicine mentioned? A small personalised trial so to speak. And is it safe to take. Even if you don’t have a cough?
The dose being tested for PD is 8-9 times higher than the maximum for cough. Its possible to import it from Europe withouts prescription but the challenge will be to get enough
Sorry if this sounds like a "stupid answer", but a 75mg 1-0-0 dose (standard for cough) seems to be dramatically effective at halting the progression of PD symptoms (and coughs) in a small personal trial involving no placebos, no high doses, and no arts graduates. Of course it will be good to have the optimum dose confirmed by a proper trial, but in the meantime why not just go ahead and import it?
Went to the first of such meetings ten years ago — Exenatide was the hope, as you mentioned - it worked so well for a friend of mine on the trial that he got (eventually - a long word in healthcare) it prescribed.. I may pop over to Europe (coughs) & get my throat sorted ..
I registered for the trial and I sent off my sample for the Gene testing approx 8 months ago. Since then I haven’t heard from the research team apart from the fact that the gene test results are taking longer than expected ☹️.
I’m now considering taking Ambroxol as I can buy it in Spain where we often spend time at our holiday home. The big question is, what dose should I consider taking?
However, there’s a very big downside - I would be excluded from the trial.
But 5 years is a long time to wait and if there’s a possibility that I could benefit from this drug now then it’s maybe worth considering. I’m sure many others are thinking the same and may have already started to Ambroxol?
What a dilemma!
Rory, as always I appreciate your even-handedness but agree that the glacial pace of these trials and reports is discouraging. Approval by 2030 even seems optimistic! I live in the San Francisco Bay Area, and wonder if one has to be within the UK and part of the national health service to be considered for the trials.
I am hoping to participate in this trial not just for my potential benefit, but also for my children and grandchildren who might have inherited the GBA mutation. The delays have been frustrating but I understand the need to ensure the trial tests what it sets out to test as safely as possible. I suspect that medical research trials are underfunded and understaffed, which probably doesn't help when dealing with the necessary paperwork.
How will they know who has the gene mutation? I don’t think they regularly test for that when people are diagnosed.
Irene - the researchers encourage to go to pdfrontline.com where you can register for both the trial and for genetic testing at the same time, if you wish.
But we can't all register for the trial. Only those who have been diagnosed within the last seven years.