Nilotinib for LBD: Has anyone had any... - Cure Parkinson's

Cure Parkinson's

25,480 members26,803 posts

Nilotinib for LBD

Bretray profile image
8 Replies

Has anyone had any results they would like to share? My mom has Dementia with Lewy Bodies and I'm considering trying nilotinib/tasigna

Written by
Bretray profile image
Bretray
To view profiles and participate in discussions please or .
Read more about...
8 Replies
MBAnderson profile image
MBAnderson

How would you get it?

Bretray profile image
Bretray in reply to MBAnderson

Maybe apply for financial aid from the manufacturer? Not sure. Any ideas?

MBAnderson profile image
MBAnderson in reply to Bretray

Also, you need first to find a doctor to prescribe and if you're in the US, that might be difficult.

Bretray profile image
Bretray in reply to MBAnderson

I have a doctor in New Hampshire who has prescribed it about 25 times so far.

anna1060 profile image
anna1060 in reply to Bretray

Hi. Many thanks for letting us know there are possibilities for obtaining this drug independent of research trials. Are you able to give us his name?

Bretray profile image
Bretray in reply to anna1060

Can you email me directly and a brief summary of your situation and I can talk to the doctor? I don't yet have the prescription so I feel very cautious of upsetting the cart beforehand. Porphyrio@aol.com

MBAnderson profile image
MBAnderson in reply to Bretray

I didn't think many pwp knew about him

Bretray profile image
Bretray

I don't know who knows. There was press about him. Did he help you out?

You may also like...

Researchers link vascular defects to progression of Parkinson's disease. nilotinib may help

Has anyone seen this?And what do you think? https://www.tangoherbs.com/2021/11/17/researchers-link-

Long‐Term Safety and Clinical Effects of Nilotinib in Parkinson's Disease (Nov 20, 2020)

Georgetown University asked me to share the most recent paper on Nilotinib with you all....

Medication for Osteopenia with Parkinson’s

already in the mix, but wonder if anyone in this forum has/is on any prescribed medication for...

Who here has a bad neck?

This is just something I'm wondering but who has a sore neck, or a neck that takes bugger all to get

What is the percent of people with PD that B1 has helped?

Would any one know of a study or anecdotal evidence of people with PD that B1 has helped? If it...