Nilotinib: From rigid to walking, talking, getting something to eat etc

About Parkinson's and health Treatments and therapies
1

Hi everyone

Nilotinib info from Georgetown’s Laboratory of Dementia and Parkinsonism:

Study participants with earlier stage disease responded best, as did those diagnosed with Lewy body dementia, often described as a combination of Parkinson’s and Alzheimer’s diseases

For the therapy to be as successful as possible in patients, the agent would need to be used early on in neurodegenerative diseases, Moussa hypothesizes.

Moussa is planning a phase II clinical trial in participants who have been diagnosed with disorders that feature buildup of the protein alpha Synuclein. These disorders include Lewy body dementia, Parkinson’s disease, progressive supranuclear palsy (PSP) and multiple system atrophy (MSA).

Alan Hoffman, a professor emeritus of social science education at Georgia State University, was diagnosed with Parkinson’s disease in 1997. He says he participated in several clinical trials with no benefit until he enrolled in Pagan’s study.

“Before the nilotinib, I did almost nothing around the house,” he says. “Now, I empty the garbage, unload the dishwasher, load the washer and the dryer, set the table, even take responsibility for grilling.”

In the three weeks prior to enrolling in the study, Hoffman says he fell eight times, but he only fell once during six months on the study. His speech has improved, as has his thinking. 

“My wife says it’s life-changing for her and for my children and grandchildren,” Hoffman says. “To say that nilotinib has made a change in our lives is a huge understatement.”

Hoffman and other patients in the clinical trial can continue taking nilotinib as part of an expanded access study. 

https://gumc.georgetown.edu/news/Researchers-Report-First-Therapy-Appearing-to-Reverse-Decline-in-Parkinsons
https://www.georgetown.edu/news/cancer-drug-parkinsons-study.html

My into again with more info:
http://www.parkinsons.org.uk/forum/thread/79093

 

2

Looks interesting- is any research / trial activity going on in the UK with this?

3

I don't know Aviator. 

I do know the sooner you start taking it the better it works:

...Study participants with earlier stage disease responded best, as did those diagnosed with Lewy body dementia, often described as a combination of Parkinson’s and Alzheimer’s diseases,” Pagan says...
https://gumc.georgetown.edu/news/Cancer-Drug-Improved-Cognition-and-Motor-Skills-in-Small-Parkinsons-Clinical-Trial

As its already been through Phase III trials for cancer, a lot of the studies have been done. Toxicity etc. and at much higher doses than used in the Parkinson's initial study:

Up to  800 mg is used for Cancer.
150-300 was used in the the Parkinson's study, recently published online in Human Molecular Genetics, where it was found be "...a novel strategy in treating neurodegenerative diseases that feature abnormal buildup of such proteins involved in Parkinson’s, Alzheimer’s disease, amyotrophic lateral sclerosis (ALS), frontotemporal dementia, Huntington disease and Lewy body dementia, among others..."
https://www.georgetown.edu/news/cancer-drug-parkinsons-study.html

 

4

I am super keen on knowing more about this drug.

5

Dasatinib, high-dose imatinib and nilotinib for the treatment of ... - Nice
https://www.nice.org.uk › the-technologies
The cost of nilotinib treatment is £31,711 per year, assuming a treatment regimen of 400 mg twice daily.

The results are magic but even though it could be available quickly as a repositioned drug, the cost would make it unlikely...around £8,,000 a year as against about £800 ayear for Sinemet.

Got to make sure there is enough money for the important things in life such as bombs and massive bonuses for bankers!

Here's hoping...

GG

6

How depressing indeed.. I have no doubt such an expensive drug won't be brought into nhs. Indeed fat cat salaries, bonuses and more money every minute being funneled into the hands of the 0.1% it's hard not to despair.

 

but, I believe with hard graft- campaigning, perhaps a reduction in price... I am Told the amount of mg is much less than that required for leukemia - perhaps the price will be lowered with higher demand from parkinsons market ?? - ps why is this drug so ££ what exactly does it have making it so costly? 

.. Ufft damn call me me a dreamer but I won't let them or parkinsons  take away hope. 

And so.. Avanti!!

 

Ps thank you for links!

7

Excuse me for being thick. But what does R+D stand for?

8

Dangerous and possibly illegal!

9

R+D= RESEARCH AND DEVELOPMENT me thinks

10

Dangerous:

Yes it can be:
The lab might not supply Nilotinib or the Nilotinib could contain excessive amounts of residual solvents or heavy metals etc.
This is why I have researched, found and negotiated with an American lab to test the N.
Here is the reply I got detailing the testing that will be done.

...This is *** following up on your inquiry.
Let me be sure we grasped the essence of your inquiry well:

You have a quantity of material, which is presumed to be pure Nilotinib.
You wish to
1. Confirm that it is indeed Nilotinib. Using mass spectrometry one will
determine mass spectrometry is indeed an appropriate tool. Full scan will
yield MW and tandem MS will yield fragmentation pattern. Their match with
those published will indeed confirm compound identity

2. Assign purity by UV.

3.  It is highly unlikely to have heavy metals present in a sample
purported to be a pure compound, even if it comes from Southwest Asia. If
you wish to have the sample tested for metal content please tell what
metals are of the concern. Pb and Cd are common suspects...

That said:  Niltinib is NOT aspirin and due care should be taken by anybody who takes it!
See "Dose Modifications" here:
http://reference.medscape.com/drug/tasigna-nilotinib-342198

At the very least I would dose up on  potassium and magnesium and make sure I am not taking any CYP3A4 inhibitors.

Also note that the doses used in the PD trial were 150 - 300mg.  Not the 400 etc mg used for Leukaemia etc.
At these doses the only side effect noted was agitation caused by too much Dopamine from the std PD meds, due to patients producing their own, naturally again.
They just cut the dosage or discontinued it.
 

Possibly illegal:

Nilotinib is NOT a controlled substance.

This is the disclaimer one finds on the sites of manufacturers of this sort of thing:
"Products currently covered by valid US Patents are offered for R&D use in accordance with 35 USC 271(e) +A13(1). Any patent infringement and resulting liability is solely at buyer risk."

So the patent holders cant sue the manufacturer for selling you N, as you have bought it for Research and Development purposes.
Norvartis my try to go after you I suppose.  I 'am testing it on my hamster...'  for longevity effects due to its ability to increase PARKIN expression and the clear misfolded proteins from cells... cool


Now I am a totally unknown person here:.
HowTF do you know I am not trying to pull a fast one!?
You don't.  And nothing I can say here should change that!
But I am not an unknown person on Longecity.org where I have been a member for over 4 years, am known and trusted, and have already started a group buy thread for Nilotinib...

I do hope you will, at the very least, take a look at the thread.

I would also do a GoogleSieSearch of Longecity.org for 
Alpha Synuclein
Not only for the valuable info on accessible and practical ways to control Alpha Synuclein, but also to get a feel for the type of info and calibre of people on that forum.

I do hope I haven't broken any rules here?
Please let me know if I have.




 

 

11

We've removed a post.


It can be harmful to take drugs that have not been prescribed by a health professional. This is especially the case where the drugs have not been fully tested and are sourced from an unknown supplier.


We won't let these types of offers remain on the forum and if you spot them, please report the post or call our helpline for more information.

12

Myself and a group of like minded people on the Longecity forms have got together to do a group buy of Nilotinib.
We have passed the minimum amount of 500 grams for a total of 625 grams so far and will be placing the order on monday Morning.

It will then go to a lab for 3rd party purity testing who will also divide up the parcel and post it to the end 'rsearchers'.

My reception here has been.... cool,  especially by the administrators... and I prefer the company of people who would rather take a chance with Nilotinib and other promising research meds, than live with PD etc. 
So do post here so that I know its worth posting more info on  in the results of our 'research and development' 

 

13

Logic, 

I can understand  why some PwP, seeing the remorseless progression of the disease, will be prepared to try something risky. After all, even doing nothing comes with its own risk.

I believe it essential that you objectively monitor the effectiveness, or otherwise, of the treatment. Testing should start before anyone takes the drug, with each person baselining the current state of their PD. Once the drug is being taken, tests should be taken at frequent intervals. At the very least tap tests should be considered: they give objective results and can be quickly undertaken. A mechanism to report side effects should be in place. If interim results are bad, you should be prepared to stop the treatment early.

This is a lot to ask of your volunteers, but the results will be taken more seriously if you make the tests double blind, placebo controlled.

Best wishes.

John

14

I completely get why anyone would be playing their cards in Nilotinib.

I wish you all well and great results.

Wise words from above poster John.

Please report back how you get on- otherwise will follow your outcome on other forum.

 

15

Ezinda,

I am disappointed that your policy is to remove threads/discussions of compounds unless they are prescribed.  I feel such a policy is a disservice to pwp.  I believe people read health issue forums to find out what works for other people that is not government approved, that is not evidence based, and/or that is off label.  The FDA and UK has approved so precious little for PD, we hardly need forums to learn what can be prescribed. 

I would like to see what your policy would be if every person involved in setting policy had PD.  There's a suggestion I believe would greatly improve your contribution to pwp.

Isradipine is a good example.  It cannot be prescribed for PD - yet.  It was approved by the FDA in 1990 for hypertension.  Currently, it is in it's 3rd year of phase III trials in 57 locations in Canada and the US to determine if it slows the progression of PD.  That means dozens of panels of scientists, doctors, PD neurologists, etc. and executives of universities, governments, and PD foundations are betting tens of millions of dollars that it will be approved as safe and effective to slow PD. 

That's good enough for me.  I'm taking it.  Slowing my progression now instead of years from now waiting for FDA recognition will make a big difference in my life. 

I learned about Isradipine on a PD forum.  When you remove threads, i.e., when you control what one person writes, you control what other people read and therefore what they think. 

If I had not learned about Irasdipine from a PD thread, I would not have been able to research, find out what a harmless, ineffective drug (for hypertension) it is and would not have been able to decide what's best for me.  With all due respect, your organization does not know me or anything about me and, therefore, cannot possibly know what is best for me.  Consider letting people do their own research, make and be responsible for their own decisions.  

I agree with Logic.  There is too much $$ self interest involved in the process for me to trust the medical establish puts my best interest before their own best interest.

To be completely candid, I'm a 70 y.o. and find your deciding what's best for me to be arrogance and I don't appreciate it. If this forum censors discussions about every compound except those that are prescribed, it has no value to me.   

 

16

To be fair to Ezinda, she did not remove posts giving information about the drug.

She stepped in to remove a post detailing how to join in the group buy of Nilotinib.

If anyone wants to pursue that course they can go to the site that Logic suggests and get involved.

it is a difficult balance for the moderators to achieve....letting people post info about treatment outside the conventional box but not allowing advertising or recruitment that might be dangerous.

I hope Logic's group do well and that the treatment is soon available to PWP at a price the NHS will pay.

Funny how here's £204 billion available for Trident to kill millions but not to make lives better.

GG