Starting Nilotinib for PSP

[kj555]

Hi,

Has anyone started Nilotinib for PSP.We have started it off label.

Thanks

[easterncedar]

I didn't know that it could be prescribed at all yet. Where are you? I'm very interested to know, as we would try it, I think, if we could.

[carehope]

Hello kj555 !! That's so amazing !!

Ever since I read about it at least a year ago now I think , I've been so frustrated that it appeared as if no one with big $$$$$ and vision had done anything to get the ball rolling for clinical trials for PSP pts. . I believe that Dr Moussa was the person who had studied the effect of Nilotinib on Tau protein buildup and saw what appeared to be great results in mice, I think. Obviously since it's already in use as an oncology med., there's a lot known about it already so wouldn't it make sense ?!!

Please let us know the details so we can discuss it with the neurologist.. I would greatly appreciate it !!!

Thank you !!! Hope you and yours have a Christmas holiday filled with happiness and hope for the New Year! Elise in NY (USA)

[kj555 in reply to carehope]

Sure,thank you

[loustalet]

I was thinking of doing the same. And I even consulted an oncologist friend and a neurologist (friend also) who were prepared to monitor the treatment. But there are real side-effects that worried us.

At the same we discovered the salsalate clinical trial:

A 6 Month, Open-Label, Pilot Futility Clinical Trial of Oral Salsalate for Progressive Supranuclear Palsy : ClinicalTrials.gov Identifier: NCT02422485

Salsalate is a NSAID with less side-effects.

So we decided to go ahead with the support of our neurologist friend.

The product is available only in the US and only on prescription.

Has anyone done something similar?

[jillannf6 in reply to loustalet]

NO BUT WOULD BE INTERESTED!

LOL JILL ( IN THE UK)

[kj555 in reply to loustalet]

There arent any noticable side effects at this dose yet

[kj555 in reply to loustalet]

there arent any sideeffects at this dose yet

[Silverguy888 in reply to kj555]

Can you provide me more of an update with this med as you try it. My email is [e-mail]

Where do you live and what is your cost?

[ketchupman in reply to loustalet]

I had my wife try Salsalate for about 4-5 months. Didn't see any noticeable improvement. Make sure you take a lot of water with it, especially with the double dose that you take in the morning. I tried it myself a couple of times when I needed a NSAID and it really cramped my stomach for hours! My wife never complained, but maybe because her communication skills are so impaired. Good luck!

Ketchupman.

[SWISS_MISS]

Are you in the UK?

[rrunk7]

Yes, please do send us more detail. Dosage ? Are you reducing other meds? Cost? I have read that off-label use of an already approved drug is quite common. Neurontin is an example as are many antibiotics (for Lyme disease for example). I am very interested in doing the same thing. Thanks for posting and looking forward to more info from you !!

[sammy90210]

Hi

I read somewhere that using Nilotinib reduces the effect of carpidopa-levodopa and if you stop Nilotinib, carpidopa-levodopa doesn't have any effect anymore - so please do check up with your doctor on that

[Hidden]

Hello, could you let's us know how you are dosing the nilotinib plz? Or does anyone else know? I have a friend online who's mother has cbd and they are going off label.

[easterncedar]

I wonder if there you have any news for us yet? Forgive the impatience, I know it's early days. Any side effects? Best, ec