691 replies to this topic

[khalidnt]

Hello everyone,

 

I would like to buy 3 months Nilotinib 150 mg. what is the process. I just read 1st pages of the forum.

And I guess you are now at 3rd round!

 

Please advice on the way forward.   Also, I will I appreciate any feedback from ppl who bought this drug.

Regards,

Khalid

Edited by khalidnt, 16 September 2016 - 12:31 PM.

[Logic]

Round 3 progress report:

 

I have received the following Email from the testing lab today:

"We had a large batch to run on LC-MS. Will run yours tomorrow. Hope to
have it shipped write away..."

[Ark]

Can N help Cerebellum syndrome?

[Logic]

Can N help Cerebellum syndrome?

 

I had a quick look at the causes here:

https://en.wikipedia...ective_syndrome

 

The causes of CCAS lead to variations in symptoms, but a common core of symptoms can be seen regardless of etiology. Causes of CCAS include cerebellar agenesis, dysplasia and hypoplasia, cerebellar stroke, tumor, cerebellitis, trauma, and neurodegenerative diseases. CCAS can also be seen in children with prenatal, early postnatal, or developmental lesions.[3] In these cases there are lesions of the cerebellum resulting in cognitive and affect deficits. The severity of CCAS varies depending on the site and extent of the lesion. In the original report that described this syndrome, patients with bihemispheric infarction, pancerebellar disease, or large unilateral posterior inferior cerebellar artery (PICA) infarcts had more cognitive deficits than patients with small right PICA infarcts, small right anterior interior cerebellar artery infarcts or superior cerebellar artery (SCA) territory. Overall, patients with damage to either the posterior lobe of the cerebellum or with bilateral lesions had the greatest severity of symptoms, whereas patients with lesions in the anterior lobe had less severe symptoms.[2] In children, it was found that those with astrocytoma performed better than those with medulloblastoma on neuropsychological tests.[3] When diagnosing a patient with CCAS, medical professionals must remember that CCAS has many different causes

 

So N may help if the cause is improperly cleared misfolded proteins and other intracellular  junk, but will probably not help in most cases.

[Logic]

Round 3 progress report:

I have received the following Email from the testing lab today:  "...I ran out of one of the solvents used in HPLC. Just arrived..."

 

Personally I am just glad the good Dr. is willing to take the time out of his busy schedule to not only test the N, but to measure out, package and post off everyone's order.
I will continue to keep everyone updated.

Edited by Logic, 22 September 2016 - 07:31 AM.

[Library]

Count me in on the next group buy--or the leftovers from the last

[Logic]

Count me in on the next group buy--or the leftovers from the last

I have added you to my spreadsheet Library and will contact you and everyone once I have had some sleep and recovered from the jetlag.

[knasse]

I was in on group buy #2 and I think I am seeing some positive effects, so I would like to join group buy #4.

[Rawin]

Hi Knasse

Could you share the positive results you had. Any side effect? How long you been on n?
Iam excited about the good news!

[knasse]

Hi Rawin,

 

As far as I understand, someone (who?) is assembling the findings from everyone taking N and that we are asked not to make individual posts here on this forum.

 

But for now I can tell you this much:

* I have been on 150mg/day of N for almost 2 months

* From the past I know I have better periods and worse periods so it is really hard to tell if things are really getting better, but I do think the improvements I am seeing is more than just a good period and placebo.

* The side effect I have seen is that I had some very itching rashes on my legs for a few days, but that is gone now. Itching rashes seems to be a well known side effect of N.

 

I also got a private message asking how I take the N and I thought I could answer it here. I eat the powder directly off a spoon and swallow it down with some water and a teaspoon of apple (apparently this is a way Tasigna can be eaten if it is taken out of the capsule).

[Rawin]

Knasse:

Thank you for the quick response, Iam waiting for my order to arrive,I belong to the third group and I hope we all can benefit from the N.

[Rawin]

Help, what tool should I use to get accurate measurements of the powder, 150 & 300mg?
How do I preserve the powder from spoiling?

[knasse]

I bought this jewelry scale: 

https://www.amazon.c...p_prd_ttl_sol_0

and this calibration weight:

https://www.amazon.c...p_prd_ttl_sol_1

 

I put a tiny piece of greaseproof paper on the scale and add N until the scale shows roughly 150mg more (I think it does not matter so much if it is 10-20 mg more or less some days). Then I pour the N from the paper on to a spoon. 

 

As far as I understand it is ok to keep N in room temperature, but make sure to keep it dry.

[David Watford]

I have just embarked on a course , from buy #2. I don't expect to see any change for at least 6-8 weeks. Also, looking at the trial data, two things seem relevant to this view. The first is that several participants had a lower UPDRS score in the first month and in month 2, the score went up again, albeit temporarily. I infer from this that the effect could well be psychosomatic (and a good thing too!) but month 2 could seem a bit disappointing. The second thing is that the individual results were very variable. This seems to me to fit in with the results from other treatments.. like stem cell therapy.

Making the dose:

We are using jeweller's scales, a 3" square piece of greaseproofed paper, a 12" square of greaseproofed paper, some capsules (I think we are using size "0")

The scales are put on one side of the big square of paper. This paper will catch any spillage. We (that's my lovely wife, that is!) tare the small piece of paper and weigh 150mg. (or whatever).

Open the capsule and, putting the small piece of paper on the big piece, a knife is used to scrape the N into the long end of the capsule. The cap goes back on the capsule.

This is very convenient, meaning that I can travel etc. It also means I don't have to think about Parkinson's any more than necessary.

 

Edited by David Watford, 28 September 2016 - 10:22 PM.

[Rawin]

Thanks for sharing information on how to weight N to get the correct dose.

[Oanh Nguyen]

I have just embarked on a course , from buy #2. I don't expect to see any change for at least 6-8 weeks. Also, looking at the trial data, two things seem relevant to this view. The first is that several participants had a lower UPDRS score in the first month and in month 2, the score went up again, albeit temporarily. I infer from this that the effect could well be psychosomatic (and a good thing too!) but month 2 could seem a bit disappointing. The second thing is that the individual results were very variable. This seems to me to fit in with the results from other treatments.. like stem cell therapy.

Making the dose:

We are using jeweller's scales, a 3" square piece of greaseproofed paper, a 12" square of greaseproofed paper, some capsules (I think we are using size "0")

The scales are put on one side of the big square of paper. This paper will catch any spillage. We (that's my lovely wife, that is!) tare the small piece of paper and weigh 150mg. (or whatever).

Open the capsule and, putting the small piece of paper on the big piece, a knife is used to scrape the N into the long end of the capsule. The cap goes back on the capsule.

This is very convenient, meaning that I can travel etc. It also means I don't have to think about Parkinson's any more than necessary.

I started at 50mg/day as I am very sensitive to drugs.Did that for 2 weeks, all ok, then I went to 75mg/day for 2 weeks. All ok at 75mg, so went to  100mg for 4 weeks. I felt much better after that, so jumped to 150mg/day.  Not good, had neck pain and didn't feel good, so went back to 100mg. 2 weeks later went to 125mg. Then went to 138mg, but fter 1 week my hubby and I decided my balance and gait were worse, and I didn't feel that good. So now back to 100mg and I am much happier. For me, more is not better.

[Oanh Nguyen]

Hi David,

 

About your stem cell comment. Care to expand on that?

 

Have you had stem cell therapy? Know someone who has?

[Logic]

Round 3 progress report:
 

Round 3 has been posted.
I will send everyone their tracking #s as soon as I have them turned back into text with OCR software.
NB that due to the OCR software nor always being 100% accurate, your # may be incorrect.
Plz contact me if your # does not show a parcel on:
https://tools.usps.c...irmAction_input

 

I will get the redacted test results posted soon too.

Edited by Logic, 30 September 2016 - 03:19 PM.

[tunt01]

 

Total tau is down vs. baseline (6 month result in 300mg seems weird).

Phospho-Tau only declines modestly in the 300mg group.

Abeta-42 is down modestly, but not significantly so.

 

Why do we care about Nilotinib in Alzheimer's? Are these results pretty uninteresting because 1) This drug doesn't work in Alz patients or 2) These aren't Alz patients, so obviously we aren't going to see anything useful.

 

The drug seems to really work in Parkinson's.

 

 

 

ps:  What's the best thread to discuss the Moussa (georgetown) paper on Nilotinib, if not this thread?

 

 

[David Watford]

Another thread

https://healthunlock...about-nilotinib

[David Watford]

 

I have just embarked on a course , from buy #2. I don't expect to see any change for at least 6-8 weeks. Also, looking at the trial data, two things seem relevant to this view. The first is that several participants had a lower UPDRS score in the first month and in month 2, the score went up again, albeit temporarily. I infer from this that the effect could well be psychosomatic (and a good thing too!) but month 2 could seem a bit disappointing. The second thing is that the individual results were very variable. This seems to me to fit in with the results from other treatments.. like stem cell therapy.

Making the dose:

We are using jeweller's scales, a 3" square piece of greaseproofed paper, a 12" square of greaseproofed paper, some capsules (I think we are using size "0")

The scales are put on one side of the big square of paper. This paper will catch any spillage. We (that's my lovely wife, that is!) tare the small piece of paper and weigh 150mg. (or whatever).

Open the capsule and, putting the small piece of paper on the big piece, a knife is used to scrape the N into the long end of the capsule. The cap goes back on the capsule.

This is very convenient, meaning that I can travel etc. It also means I don't have to think about Parkinson's any more than necessary.

I started at 50mg/day as I am very sensitive to drugs.Did that for 2 weeks, all ok, then I went to 75mg/day for 2 weeks. All ok at 75mg, so went to  100mg for 4 weeks. I felt much better after that, so jumped to 150mg/day.  Not good, had neck pain and didn't feel good, so went back to 100mg. 2 weeks later went to 125mg. Then went to 138mg, but fter 1 week my hubby and I decided my balance and gait were worse, and I didn't feel that good. So now back to 100mg and I am much happier. For me, more is not better.

 

 

Diary to date.

I received my N about a month ago. Prior to this, I discussed the situation with a non NHS (the UK National Health  Service) neurologist and we decide to  make an assessment of my condition and establish a baseline position. So 3 weeks ago, we carried out the motor section (Part III: clinician-scored monitored motor evaluation) of the unified Parkinson's disease rating scale (UPDRS). I also consulted a hematologist and had a blood test done. I haven’t asked for the results for these, as it’s the difference over time that I’m interested in.

I started with 150mg/day. As someone advised me, I took it with food at night to increase the effect. This was a mistake. I started getting side effects including those of indigestion and fatigue, and these escalated to what I found to be intolerable levels. The literature says that grapefruit and food will possible triple the effective dose. So, at the end of two weeks I stopped and the side effects went away. Today, I am starting again with 50mg 2 hours after the last meal of the day. I’ll try that for 2 weeks and if that’s OK, I’ll increase the dose. My body is still quite functional, so I am in no hurry to “fix” things.

More later

 

[tunt01]

Hrmm.  Seems to me like nilotinib should be taken on empty stomach.  If the drug is triggering autophagy, shouldn't the biological state of the person be most compatible with autophagy (i.e fasting)?  

 

There is a real cardiovascular risk associated with nilotinib.  I would think the best situation would be to take the drug early in the AM, go for a walk/exercise throughout the day, then eat later at night/evening.

 

 

[David Watford]

Hrmm.  Seems to me like nilotinib should be taken on empty stomach.  If the drug is triggering autophagy, shouldn't the biological state of the person be most compatible with autophagy (i.e fasting)?  

 

There is a real cardiovascular risk associated with nilotinib.  I would think the best situation would be to take the drug early in the AM, go for a walk/exercise throughout the day, then eat later at night/evening.

 

Thanks Prophets.

Do you mean : eat only once per day!?

[Levanah10]

Hello all,

 

I'm new to this thread (though not quite so new to Longecity). My husband (74 years old) has Parkinson's, diagnosed late but probably about 10 years into it. I've been following current PD research for the last 3 years or so, it's obvious they're homing in on how the disease actually operates (though not yet on what causes the disease to start in the first place), and my guess is they'll probably have workable neuroprotective treatments, at least in testing, in about 5-6 years. In the meantime: nilotinib seems the most likely course to stave off worsening of the disease. I've been following the thread(s) on nicotinamide riboside for mitochondrial health here on Longecity for about 6 months and found some very useful advice there (if you have Parkinson's and haven't checked that thread out, I recommend it). Now I'm looking for advice on how to obtain nilotinib, and found this thread. I have some practical questions about this group buy that others may have also--so here they are:

 

1) Is the nilotinib being purchased in this group buy in powder form? If so, where is it manufactured, and is there an assay done to test purity?

   

2) Is there another source anyone here knows of -- a recommended Canadian pharmacy, e.g. -- to purchase Novartis nilotinib in capsules? (I'm concerned about getting an accurate dosage otherwise.)

 

3) Assuming a price of about $1500/mo from a Canadian pharmacy for Novartis nilotinib, for the lowest dose used in the Georgetown nilotinib study (150 mg/daily), how does the price of the non-encapsulated nilotinib compare with that?

 

4) If my husband and I decide to participate in the next group buy, how do we do that? Is a prescription required?

 

I understand there's a way to "private message" people here on Longecity--I assume it's the "messenger" function at the top of the page--so please feel free to send me a private message if there's some reason answers to any of these questions can't be posted openly. Thanks.

 

[MarcB]

I am about to begin with N, but currently take the supplements NAC (N-acetyl cysteine) and TUDCA (Tauroursodeoxycholic acid.)  Does anyone know or have an opinion if I should discontinue either or or both?

 

Thank you.

[khalidnt]

Hello all,

 

I'm new to this thread (though not quite so new to Longecity). My husband (74 years old) has Parkinson's, diagnosed late but probably about 10 years into it. I've been following current PD research for the last 3 years or so, it's obvious they're homing in on how the disease actually operates (though not yet on what causes the disease to start in the first place), and my guess is they'll probably have workable neuroprotective treatments, at least in testing, in about 5-6 years. In the meantime: nilotinib seems the most likely course to stave off worsening of the disease. I've been following the thread(s) on nicotinamide riboside for mitochondrial health here on Longecity for about 6 months and found some very useful advice there (if you have Parkinson's and haven't checked that thread out, I recommend it). Now I'm looking for advice on how to obtain nilotinib, and found this thread. I have some practical questions about this group buy that others may have also--so here they are:

 

1) Is the nilotinib being purchased in this group buy in powder form? If so, where is it manufactured, and is there an assay done to test purity?

   

2) Is there another source anyone here knows of -- a recommended Canadian pharmacy, e.g. -- to purchase Novartis nilotinib in capsules? (I'm concerned about getting an accurate dosage otherwise.)

 

3) Assuming a price of about $1500/mo from a Canadian pharmacy for Novartis nilotinib, for the lowest dose used in the Georgetown nilotinib study (150 mg/daily), how does the price of the non-encapsulated nilotinib compare with that?

 

4) If my husband and I decide to participate in the next group buy, how do we do that? Is a prescription required?

 

I understand there's a way to "private message" people here on Longecity--I assume it's the "messenger" function at the top of the page--so please feel free to send me a private message if there's some reason answers to any of these questions can't be posted openly. Thanks.

 

My understanding they will do ROUND 4 Group Buy "I guess".   N is available in China for research and some suppliers can be found in alibaba but,

you will need to verify it with a testing LAB.  It cost 50 - 260$ per gram depends on the manufacturer and Empty Capsules are available in Aliexpress. 
I placed an order for 15g and I'm waiting for the shipping hopefully I will receive it within a week.

[khalidnt]

Another good news:

New drug treatment Opicapone launches in UK

 

 

Another good news:

New drug treatment Opicapone launches in UK

 

 

[Logic]

Hello all.
I got an offer I could not afford to pass by to go and help with the setup of a gold mine in Mozambique.
It was on very short notice, so I dropped everything and ran.
I'm back, browner and fitter.

I dont see any PMs or Emails from the round 3 researchers,  so I assume everyone received their N in good order?

 

I was in the middle of collating the reports I had received when I left.  Quite a job with them spread out over Emails and PMs.
I will get back to it asap.  There is a lot of catching up to do!

I also want to get round 4 going as there seems to be enough interest already.

I will get on that too as time allows this weekend.
 

More soon;  there are a lot of 'balls to pick up and juggle'!  

[tunt01]

I previously ordered 50g of Nilotinib.  I probably used ~0.4 grams (400 mg).  I don't like the stuff and I don't think it's for me.  I just don't think it agrees with my phenotype and my metabolism.

 

I'm pretty sure this drug works as advertised.  I really noticed it working.  But I just think the risks vs. the reward are not worth it for me.

 

If anyone wants my Nilotinib (50g) let me know via private msg.  I am asking what I paid for it (~$500).

 

 

Edited by prophets, 22 October 2016 - 09:54 PM.

[Linda Gray]

Can you get nilotinib from a Canadian pharmacy for $1500US a month?

Logic, have you run across any reports from researchers that have MSA?