Inhaler

[1dkramer]

Has anyone been in the study about the new inhaler for l-dopa, and if so how was it?

[grey]

Yes. Very promising as a rescue. I found it brought me on in a matter of minutes compared to a normal of about one hour. I was able to take part in activities I had abandoned. Also drive places without fear of long off periods. It was a real life changer and a big blow to hand back at the end of the trial.

[1dkramer]

We're you in a study? I was told today that the big study ( #3 ) will start sometime this year or next.

[grey]

Yes, I was in phase 2b which CVT recently reported a success. I heard phase 3 is recruiting soon but, alas, I understand I'm not eligible as I was in previous phase. I haven't been told if I was in the placebo group, but doubt I was as the results were quite dramatic. For example, I missed out any overnight meds and my morning dose too. I was very off and could only shuffle along hospital corridors. I felt as though I was wearing a concrete jacket and had difficulty getting out of a chair. About 5 minutes after inhaling the levodopa I was able to fold my arms and rise from the chair unaided. And repeat the manoeuvre.

[harding55]

I hope it's available soon!

[johntPM]

I have no experience of the clinical talked about. But on the key issue of the time it takes for levodopa (in my case Stalevo) to take effect, I find that taken normally it takes about 60 minutes to take effect, whereas dispersed in vitamin C it takes about 40 minutes. See:

neurotalk.psychcentral.com/...

Has anyone tried a DIY nasal spray?

John

[fronya69]

Morning- The only nasal spray iv"e heard about, is GDNF, testing is studying the effects of a nasal spray which breaks (GDNF), breaks thru the brain blood barrier. This is agreat drug and has done what sinemet doesn't. Sinemet is absorbed thru the stomach and loses at lot of the potency. where by going with a nasal spray, it acts quicker and doesn't lose much of it's potency at all. Where r u located at.? The only study iv'e heard of with carbadopa and levodopa is Rytary. Which is a longer acting sinemet. 6-8 hrs. FYI Fronya

[grey in reply to fronya69]

Hi Fronya,

I'm reminded that I have signed a non-disclosure agreement relating to this trial and will therefore limit my response to what is already in the public domain, although I know little else anyway. Point of detail, it uses an asthma style inhaler, not a nasal spray. Suggest you go to civitastherapeutics.com/new... and read article 04.28.2014.

Re GDNF, I don't understand how a nasal spray breaks down GDNF to a form which passes through the blood brain barrier. I agree that GDNF is a great drug or at least has the potential to be such, but is plagued by difficulty getting through the BBB. Currently the development of delivery through catheters is under trial by team at Frenchay Hospital at Bristol. This follows the abandonment of similar trials by others in past.

Last year, Phytopharm abandoned aural drug, Cogane, which was designed to get GDNF through the BBB.

Comparing Sinemet to GDNF is a tad unfair, Sinemet is a levodopa treatment which does actually work and has benefited many pwp for decades, although there are many issues and side effects. GDNF is a neuroprotecter which has great potential but as yet not proved that it can be delivered efficiently and safely, and at an acceptable price.

I'm located in the UK.

Grey.