Specifically, they discovered that the 300-mg dose of nilotinib reversed these effects by inactivating a protein called DDR1 that affects the ability of the blood-brain barrier to function correctly. On the inhibition of DDR1 by nilotinib, the normal transportation of molecules in and out of the brain filter resumed, and inflammation declined to the point that dopamine was being produced again.
“Not only does nilotinib flip on the brain’s garbage disposal system to eliminate bad toxic proteins, but it appears to also repair the blood-brain barrier to allow this toxic waste to leave the brain and to allow nutrients in,” Dr. Moussa
Thanks for linking to that post. In case anyone who is enthusiastic about nilotinib does not care to read those comments, many of us here and elsewhere are skeptical of the Georgetown work, for good reason, and that includes MJFF:
“Much work remains to be done, but just knowing that a patient’s cerebral vascular system is playing a significant role in disease progression is a very promising finding.“.
Key words, Xenos, "Much work remains to be done, . . ." How long does this translate to until it's approved by FDA and repurposed for PD?
As I understand it, Nilotinib affects PD by sort of plugging leaks in the BBB. Memantine affects PD by blocking NMDA. I haven't found how that helps PD. I ask because I recently added memantine 5mg SID to the Rytary I take TID. When the neuro prescribed it she was careful NOT to tell me it's generally used to treat Alzheimer's. Yikes! I started in on 11/10. Eventually I'm supposed to increase the dose, depending on how it affects me. I can't tell whether it helps me.
I wonder if the two drugs taken together might work better than each taken alone. Eventually I'll have to retake the cognitive function test I took last year and did so poorly on. This test took 3 hours and I was warned it can be brutal. The first part was listing all the animals that start with the letter A. In case it's the same test I've been memorizing lists of animals that start with an A: Antelope, aardvark, aardwolf, alpine wolf, fox and hare, angelfish, ant, anteater, auk, auroch, aligator, aligator garfish, anemonie, amoeba, asp, african deer, lion, elephant, hornet, and maybe a dozen others if I work at it long enough. Or maybe write them on my forearm.
Ah but you're a clever devil, memorizing for the test! But how valid are the test results then? Not to call the kettle black, I always concentrate on swinging both arms when I walk to my neurologists office (with her behind me watching). I have found a good way to coordinate arm swing as imagining I'm drying by bum with a towel. Very convincing
I may be out of date now... but since nilotinib is already approved for "label" for a certain type of cancer, then assuming there are no other formal restrictions on it's use, at least in the U.S., prescribers might already be able to prescribe it for other than the specific label use. Up to the individual prescriber.
Paying for it and dispensing (perhaps, meaning pharmacist, chemist), establishing and distributing risks and liability might be another matter (patient insurance, prescriber's professional liability insurance, other limits and factors specific to the prescriber's and patient's country, employer, government etc.). But such off label use is not uncommon, this is referred to as "off label."
So if the circumstances seem appropriate to consider in an individual case, "Try it and see" may be possible for some. Today. And if nothing else, after a time trying it out, a doctor could also potentially at least get some notice as a case study letter to the editor in some medical journal, every edition usually has that sort of section the editorial board can decide to publish.
So in fairness, for a fortunate few it perhaps could amount to a "Holy Sh**!" type of moment.
Hi JJ. I'm 70 years young soon to be 71. My Neuro says I have advanced Parkinson's disease. On June 1, 2017 I took my first off label Tasigna capsule 200 mg. I was fortunate to get into a study similar to the PHASE 2 study hat the GU was conducting. I applied to be included. in GUs study but was turned down. They wanted locals who were within driving distance. A little background, in October 2015, GU released results of a small PHASE 1 study with a local nursing home with 12 elderly patients. All patients and researchers knew there was no placebo group - all 12 patients received Tasign a of course this caused intense excitement in the Parkinson's world. This set the stage for where we are now.
I consider myself lucky to get into this study. I have vowed if I can't be cured I'm gonna try to make it easier for the next person.
I won't get to deep into the politics of Tasigna. PD costs the US $52 Bil a year. The GU principle lead owns the patent on Tasigna. The MJFF offered to help cash starved GU with the PHASE 2 study. After 6 months and a one year delay no agreement was reached. The MJFF had a very public BLACK EYE!! When GU released their preliminary results MJFF critisised. It as meaningless. The point I'm trying to make is someone is in for a huge payday and the NOBEL PRIZE!! Trying hard not to give opinion just facts or my results and interpretations.
I'll let my results do the talking: I journaled so I wouldn't forget.
1. Started Tasigna on June 1, 2017.
2. On Day 4 I stopped reaching for my Sinemet first thing in the morning.
3. Mowed my lawn on June 3 and 4. I don't have enough strength to do it in one day. On Day 20, June 20 I mowed the lawn all in one day, for the first time in 2 years!!
4. Sleep has been a problem forever. On Day 11 went to bed at 1015 and slept til 330. Best sleep in years.
5. Day 14 started getting back the urge to exercise.
6. I dose 8 X per day every 3 hours starting at 5am, 300 mg Sinemet. I was noticing no problem getting 3 hours between doses. I cut myself back one half tab on my Sinemet to 2.5 every 3 hours.
7. My sleep was really improving now. Day 14 was the second night in a row i skipped my night time 2am dose.
I am editing this post as my dyskenesia will allow. There is more to this. Thank you for your patience and understanding.
Thanks for your reply and wishing you all the very best in the future.....lets hope an amazing miracle cure is found for PD afterall the world came together to find a covid vacinne
thanks! i read it -- call me stuuuupid ... but... WHY isn't this article HEADLINES on every newscast, etc.?
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Long‐Term Safety and Clinical Effects of Nilotinib in Parkinson's Disease (Nov 20, 2020) 
Caloric vestibular stimulation for the management of motor and non-motor symptoms in Parkinson's disease
Final verdict on the efficacy of Nilotinib by the two trials: Georgetown University and Michael J Fox Foundation (MJFF)
Gut bacteria could improve symptoms in Parkinson’s sufferers, study suggests
