I’ve been in the Nilotinib trial at Georgetown almost a year and a half. The first year I’m pretty sure I was on the placebo then there was a three month “washout”. Now I’m in the “open label” phase where I actually receive the drug for the next year. I’ve been on 300mg of Nilotinib for 71 days.
There are 75 patients in the trial (I’m #41) once everyone is in the “open label” phase they will let us know what drug we we were taking the first year of the trial ....placebo, Nilotinib 150mg or Nilotinib 300mg.
What they have found out so far, that they are sharing, is that Nilotinib doesn’t work for everyone. They are thinking this has to do with genetic makeup. At this time (and this could change) Dr. Pagan thinks 200mg Nilotinib maybe the ideal dosage. I also hear through the grapevine that there have been a variety of responses to Nilotinib. Mostly all positive but of course there have been those not responding. These are just a few of the things I’ve picked up during my visits to Georgetown.
Now for how I’m doing.....I can’t say I’ve noticed any real changes in the 71 days I’ve been on Nilotinib. I’m trying to keep my head out of my observations (placebo effect) but there maybe some subtle changes that I’m watching or maybe feeling. These are a slightly improved smell not great but something. On more nights than not I sleep better and some days (not every) my tremor is less. So certainly nothing dramatic happening for me. Just hoping more improvements are ahead.
I haven’t heard from anyone else in the trial but would love some feedback from anyone else in the Georgetown trail or the MJF trial.
I hope this was helpful for those wondering about the GT trial.
Take care.
Betsy

Hello, My husband was in the MJFF trial. He was enrolled in Nov 2017 and completed the trial in Aug 2018. Do not know if he was on the placebo or not. We managed to get a prescription for the drug and he went on it for 7 months starting in Nov 2018 and ending in June of 2019. We saw very slow and modest improvements (mostly cognitive). Since he has been off, his motor symptoms are much worse (shuffling mostly). I am eager to reach out to those who are on the drug or know people who are on the drug or in the trial so we can share experiences. Please reply!!! thanks so much

This is a good read from a trial participant.

Thumbs up for Nilotinib - Phase II Tr... - Parkinson'''s Movement

Conclusion: Nilotinib is well tolerated and appears to be safe in PD patients. Nilotinib appears to stop the decline in motor and non-motor functions when the effects of PD medications wear off six months after treatment. Nilotinib may have a significant impact on the care and management of PD patients, leading to delay or elimination of dose adjustment, thus avoiding various side effects associated with PD medications.

150mg dose did better than the 300mg dose