Will Nilotinib be the Miracle Cure for Parkinsons?

[Dogmatic377]

Has anyone with PD tried Nilotinib and had a good result?

[blackbear701]

I don't believe it's been approved for PD. There is a Phase II clinical trial being conducted right now; my MDS told me about the trial; after reading all the info contained in the consent form and speaking with the trial co-ordinator, I declined participation. If anyone knows anything differently or has been prescribed Nilotinib for PD, I'd be interested to hear their experience with it.

[Hidden]

I think MBAnderson is taking it.

[moz8910gonzocat]

I do not know as I have never heard of it

[MBAnderson]

Yes, I've been taking it since 11/1/16. Frank Mundo is also taking it as is, 'isthistheone' (Jim Sherman.)

I don't believe it's going to be the miracle (or any other kind of) cure, but I believe those taking it feel its beneficial and because of the recently reported trial data, I believe it'll provide varying degrees of relief to most PWP.

It has relieved me of constipation (thank you God) and because of that, I believe it's having other beneficial effects.

Frank would know better than I, but if it makes FDA approval, that's probably 3 or 4 years out.

Marc

[Softballman in reply to MBAnderson]

One the major benefits that have been circulating is slowing and halting of progression. I’m guessing it could be hard to tell if it’s slowing or halting progression if you still feel like s—t every day. But I would definitely would be all in knowing the next step in this disease will likely worse.

[Jimf233 in reply to MBAnderson]

I am glad you mentioned your relief from constipation, over the last week I have experienced complete relief from constipation. This occurred one month after resuming taking nilotinib at 150 mg per day.

[MBAnderson in reply to Jimf233]

Jim Sherman reports the same thing, i.e., his constipation was the 1st thing to go.

[MBAnderson in reply to Jimf233]

I assume you were part of the Georgetown trial? Or, how did you come by your Nilotinib?

[Jimf233 in reply to MBAnderson]

Yes, I was part of the clinical trial group of 75. I had finished the full protocol, at that point I was uncertain if I had received any benefit from the drug. However within two weeks after going off, I began to feel much worse and had greatly increased difficulty with lightheadedness and balance. Constipation had been a long-term problem.

I managed to get pills to go back on the medication to see if the improvement would repeat. It did, after a few weeks I now feel good, I have little light headedness, and balance is better. And at least for a few days now constipation is gone.

[MBAnderson in reply to Jimf233]

Jim,

My primary concern with Nilotinib is that several users, myself included (early on I stopped for a 5 week period) have noticed a rapid decline soon as we go off the drug. Jim Sherman reports the same. I believe that was also said about the original Georgetown 12.

I don't understand why that is, but all of us are going to run out soon and we might begin thinking about what to do about that.

I understand that Novartis is supplying trial participants with a one year supply.

As you may know, as I have explained previously, I participated in a group buy where we had it made by compounding pharmacy in China. We sent our money to a third-party financial organization and the pharmacy sent the Nilotinib to a laboratory in the US. The pharmacy agreed they would not be paid until the laboratory ran a mass spectrometry test and provided a certificate of authenticity confirming that it was molecularly identical.

I wonder if those who are interested should start soon trying to replicate that process?

Getting this stuff before we run out would be prudent because we can always freeze it if we get it before it's needed.

Marc

[zhifu in reply to MBAnderson]

Marc,

I am living in Shanghai China, I would like to buy Nilotinib as well. could you let me know how can i join the group purchase? i have sent email to you but no reply.

could you help me?

thank you.

[MBAnderson in reply to zhifu]

I will send you a private message.

[FMundo in reply to Jimf233]

Jim,

Email me your email address and I will forward to you the complete report on the Phase II trial at Georgetown Medstar Hospital for nilotinib. Also, you know what's happening with the MJFF nilotinib trial? There's nothing reported on progress on the Gov clinical trial database.

[e-mail]

[tacato]

I participated in the Georgetown study, and took 150 mg of Nilotinib for two years. I am almost 5 years post diagnosis. My neurologist feels that I have been progressing slowly. Is that due to Nilotinib? Tough to say. I also exercise regularly and eat decently which likely contributes to my slow progression. I am anxious for Georgetown to publish its data. I gather that will happen soon. While I seem to have tolerated the drug well, I am most anxious to read a fuller discussion of their safety data from the study.

[FMundo in reply to tacato]

It has happened. I have a copy of the full report on the Phase II trial, which is 80 pages (well over 100 PDF viewing pages. Page 111 for positive results. This is appearing two months after trial completion. What's the usual time delay before reports appear - one year at least? Why the rush ?

I am taking Nilotinib as part of the Phase II Trial (voluntary extension, everyone gets drug for 12 months at conclusion of Trial).

I will forward the report to anyone interested. My email is [e-mail]

[sharoncrayn]

I hesitate to be a big, damp, wet towel on this drug, but this drug has so many "political" overtones already I doubt we will ever know its true benefits (other than with MBA helping his constipation). Besides, anyone who knows this CT game knows the Phase 3 trial recruitment (if we get there by 2021) will very likely remain a "placebo" type of trial with mild to moderate PD types for obvious reasons. Proves very little IMO, but with all the $$$ sunk into this baby, I don't expect anything different.

This drug has been hashed and re-hashed on this forum before very thoroughly. Use the search function.

Sharon

[Dogmatic377]

I thought that the rationale behind investigating and trialing of already FDA approved drugs (but off label) was to speed up the process of gaining approval for its use in different circumstances. When Marc (MBAnderson) speaks of four years to have Nilotinib approved that doesn’t sound very fast!! So much for repurposing. Can anyone comment from their knowledge and experience in this area of repurposing drugs what could be a realistic wait time until full approval has been gained?