"Director of the Center for Neurodegenerative Science Patrik Brundin described the trial as a 'total game-changer' if the research holds up." [Critical "if"]
"It will be the first medication in history in Parkinson's that will change the course of the disease." [Brundin]
"A year into the study, patients in the placebo group had deteriorated about two or three points on the scale, which is a typical progression of the disease... However, patients who had received exenatide had remained entirely stable and their symptoms had not worsened at all. Even after the patients stopped using the drug for a 12-week period and it was out of their system, symptoms still hadn't worsened..."
A second study hoping to reproduce similar or better results "using a different compound that is more effective at treating diabetes" (liraglutide) is currently underway in Los Angeles, CA.
Science is closing in on a Parkinson's Disease cure. I'm convinced one of these drugs will crack the code. Be it exenatide, Tasigna, Ambroxol or mannitol, maybe all of them. The real winner will be the one that stops PD progression and reverses and restores PWP to a clean bill of health. Hang in there people! Stay positive.
Yes Marc, I took it for a month last November. I thought I was having a positive response to mannitol. I started taking amantidine at the same time. I had significant problems with orthostatic hypotension. Walking up only 2 flights of stairs, I would get so dizzy I felt like I would pass out. Stopped taking both and then started back with mannitol without amantidine, couldn't duplicate results so I stopped. IMO it was amantidine that was the problem. Don't take either one now.
it depends in part on which enzymes metabolize exenatide. if a person is taking Nilotinib, they should not take any strong inhibitors or substrates of CYP3A4 because it would cause the N to accumulate to toxic levels. They should also not take any other drug that may prolong the QT interval, as is the primary risk with Nilotinib.
I was unaware some doctors are currently prescribing Nilotinib unless for patients with leukemia. Georgetown University Med Center just finished Phase II Nilotinib and is, I believe waiting to hear if the pharma co. is going to fund a one-year study in 2020 to broaden the research . My own neurologist won't prescribe Nilotinib until this Phase III is complete. Are you c urrently using it? If so, how goes it?
I have been using it since 11/1/16. I did not get it through a prescription. It has relieved my constipation and my belief is that it probably is of some benefit otherwise, but I can't be certain. It's extremely rare that you'll find a doctor to prescribe this off label.
the significance of the success of these type II diabetes drugs ( Liraglutide and Exenatide) for Alzheimer's is that Alzheimer's and Parkinson's share the same things - aggregating proteins, such as APP, aSYN, tau, SOD and from gene activation to protein synthesis to folding, misfolding, and neurotoxicity, which just happen in different parts of the brain.
Marc... the misfolding proteins, inflammation, and the insulin resistance at the root of neurodegenerative diseases leads many to consider Alzheimer's and others to be another form of diabetes (so the encouraging results from exenatide/liraglutide seem to make sense): youtube.com/watch?v=UHFHB_a...
Now that I think about it (and I should do that more often,) it would be a lot easier to find a doctor to prescribe this stuff off label. liraglutide is Victoza. $25/injection
Thanks very much for responding. I'm puzzled by the hype now about its curative properties and wonder what's really happening. It's possible that different people will respond differently to some degree but your response comes up pretty short in my opinion. Well, it is good news that you have benefitted some from it.
Its possible some people on here could have been on Tom Foltynie’s trial (this trial) which was done in the UK. He works in London.
For those interested i believe the Grand Rapids yearly meeting was the brain child of people from Parkinson’s Movement who are UK charity and who also sponsor this forum. I would guess they also were a sponsor of this trial.
I might now have read everything there is to read about Exenatide and Parkinson's and it looks to me like the data is more robust than anything else -- that we can actually get our hands on. I'm currently in the process of writing up a two or three paragraph rationale (including links to trials) to justify a doctor prescribing it to me off label. Clearly, it's safe if your blood panel, to include pancreas, etc., shows normal health. In that case, I see no reason why we shouldn't try to get our hands on it off label. (Liraglutide is Victoza.) (my wife's doctor's mother had Parkinson's and died of complications, so he understands and is sympathetic. He has prescribed Irasdipine for me off label. He'll be the first one I approach. if he wants a fasting blood tests first, I'll be sure to have a few pastries before I go in. Ha.)
I really hope they will give it to you. I'd love to know if it works.
I'm trying to simulate the effect of the drug with diet and supplements. Not easy though. It seems that all it does is slow down how your body processes sugar. Is that your understanding?
Yes, exenatide affects how we process sugar, but I don’t know if that means controlling blood sugar through diet and supplements will produce the same benefits. if it does, it is not to a meaningful degree because there are millions of us who have always had normal blood sugar, but still have Parkinson’s. yet, it seems also true that out of control blood sugar/insulin exacerbates and may induce Parkinson's. I suspect exenatide controls blood sugar in a different way than does nutrition. Or, it may be, that the drug is more potent than nutrition. I’m sure you’ve read this article.
also, check out the 13 minute video above about how Alzheimer's might be called type III diabetes. It's a good explanation of the relationship between blood sugar and Parkinson's.
of course, nutrition and supplementation is neuroprotective because among other things it can reduce inflammation and oxidative stress.
I think you're asking, exenatide is used to control blood sugar but is also beneficial to Parkinson's, so, therefore can we approximate the same benefit by controlling our blood sugar through nutrition? Put another way, are the two proteins that are found in the venom of the Gila monster that act is GLP-1 receptor agonist also available in the compounds in food? the study and the articles don't speak to this, so we don't know, but I suspect not. in other words, the mechanism of action of controlling blood sugar by nutrition is different than the exenatide mechanism of action of controlling blood sugar.
Wikipedia has an articulate description of the mechanism of action of exenatide and it's not likely that can be accomplished through nutrition.
Thanks for that. That is my thinking. If exenatide increases GLP-1 we can do this through diet. I found a website with a big list, but I can't find its legitimacy. However many of the supplements etc had already been suggested to me by my integrative GP such as arabinoguard and berberine. I know that every fasting blood test I've ever had puts me just outside the normal range, but all the Drs have said that is fine. (Why have a range if being outside the range is ok?!!). I always wondered if I was heading towards diabetes. No family history and I'm quite thin, though I do love sweet things. Everyday I tell myself I'll stop eating sugar tomorrow!
I wonder if a GP will prescribe it for PD. Here in Aus they have to apply to the authorities to prescribe a current medication for a new purpose.
I'm playing tennis today with a GP friend who is also diabetic, so I'll ask her about it. Only if I win though as I don't want her to think I'm using PD as an excuse!!!
Type II diabetes does seem to be a risk factor for Parkinson’s (as well as for Alzheimer’s), and there’s been a lot of work on the “gut-brain axis” and what’s connected to what. Exenatide has effects on appetite, crosses the blood-brain barrier to some degree, and has shown protective and growth-factor effects on neurons in vitro. So it’s certainly possible that it could have neuroprotective effects on a degenerative disorder like Parkinson’s.
I am taking Victoza for nearly three months. It is hard to tell if it is making a difference as my tremor is worse overall and I now have a foot cramp interfering with exercise. However I felt a face twitch coming on when I was starting it and that has gone.
Just wondering if you managed to find something for your foot cramp? I know your post is two years old at this point, but I thought I'd report my success in treating foot cramps (distonia) by combining Sinemet 100 mg with 200 mg neurontin every 4 hours or so. I've been using this combo for just two weeks but it does stop foot cramps very effectively. The tradeoff is a certain degree of brain fog but the only solution for me to date. I also add 0.125 clonazipam as needed, but don't like driving on those occasions.
I don't know about Australia, but there are 1 million doctors in the US and apparently there are thousands that are grossly over prescribing opiates, so it's hard to imagine they'd have an objection to prescribing exenatide. fortunately for us, the drug has an excellent safety record, so I believe I can find one who for making a few fast blocks will prescribed off label.
Please elaborate/explain your comment that, "if exenatide can increase GLP-1 we can do this through diet." isn't it the proteins in the saliva of the kilo monster that are the agonist?
(I use voice recognition software and sometimes when it gets things wrong, it's so silly I feel like leaving them alone -- kilo monster.)
I am on shaky ground here, but as far as I can see GLP-1 is an enzyme that we produce. we can produce more by making our gut environment more conducive to the bacteria that help produce it. I think this might be where mannitol fits in as well. I'm confused though so will do some more research and try to get some more coherent thoughts together.
I am on shaky ground too Astra. Remember, GLP-1 analogs can cross the blood–brain barrier and it can stimulate the GLP-1 receptor in the brain. A small amount of GLP-1 is also produced in the brain. Exenatide is known to influence various aspects of dopamine processing. In particular, it may be having an effect on a protein called dopamine transporter (or DAT), which helps to recycle dopamine back into the neuron after it has been released. It is considered possible that Exenatide could be causing changes in the activity of DAT which results in more dopamine floating around outside the neurons. Such an increase in dopamine could explain some of the motor results in the study (and the reduced rates of decline in the brain imaging).
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For Those Forum Members Taking B1 To Good Effect And Wondering What Other Health Benefit They May Be Getting From Their Use Of B1
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END GAME We may be alone
