Has anyone tried offlabel Nilotinib use for their Parkinsons ?
offlabel Nilotinib use for their Parkins... - Cure Parkinson's
offlabel Nilotinib use for their Parkinsons ?
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kj555
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How do you mean, off label? Nilotinib is also called by the trade name Tasigna. I am trying it for PD purposes now. It's been about a month. The study I read about tested people over a 6-month period, starting at 150 mg a day and building up to 300 mg.
It means given by the physician other than for the use allowed by FDA.Have you noticed any improvements ?
Oh! DUH. Well, not much so far, but it's only been a month. I don't know when people in this admittedly tiny test group started experiencing improvement...I ought to look into that.
Also, how have you modified your normal PD meds while taking Tasigna?
I don't take any CD/LD drugs, but I take propranolol and cymbalta to mitigate symptoms, mainly pain. The doc said for now, keep taking them.
check out this article Beckey journals.lww.com/neurotoday...
Alas, "The page you requested cannot be found. The page may have been removed, had its name changed, or is temporarily unavailable.</p>"
google this: In the Pipeline-Parkinson's Disease: Why a Common Asthma Drug Could Be a Disease Modifier for Parkinson's Disease
Robinson, Richard
They also talk about Propronalol
this article is pretty compelling. Enough for you to consider taking this?
Yes, please let us know! Is NILOTINIB having an impact on your symptoms??? Any other details about your experience after one month???
I will definitely keep you up to date!
Beckey, you wrote two months ago "Bah! Phooey! I've been taking Tasigna for leukemia for some six years or so. It sure didn't stop me from picking up a case of that Parkinson's bug that's been going around."
????
I was taking 800 mg. of nilotinib (Tasigna) a day for almost five years to control my CML -- Chronic Myeloid Leukemia. After reading about this clinical group, I asked my hematologist if I might try going down to the low dose the people in the group were taking to see what might happen PD-wise. He said fine as long as I agree to get frequent bloodwork, and drop the experiment if my white blood cell count started to rise. So that's where I am now.
Becky, update on your experience with Tasigna/Nilotinib? How long have you been taking now? 150mg? Any improvement in PD?
About two and a half months. Now I'm up to 300 mg a day, 150 in the a.m. and 150 in the p.m. I do feel a lot peppier but that damn fool tremor just won't be budged.
How do you obtain it & what is the cost?
Chuck
I am prescribed it by my hematologist. I get it through a specialty pharmacy called Avella in Sacramento that helps get medicines to people who could otherwise not afford them. It is astronomically expensive, I can't remember how much. I don't know how a person who does not have leukemia would get it unless your neuro is game to have you give it a try.
I'm trying it, but I may have a latent case of mercury poisoning instead of true PD. Also, I purchased it in a 3rd world country, so I am not sure it is authentic. It has no taste when I twist open the capsule and I can't find out if that is normal. For all I know, I'm taking starch. Also, I am trying 50 mg/day instead of the low dose group's 150 mg and I'm going against the directions: I take with food, grapefruit, and other CYP3A inhibitors (curcumin with peperine) in order to increase exposure. The directions indicate this causes my 50 mg doses on average to act like 200 mg. My 50 mg doses are in two 25 mg doses per day. I have not noticed any effect, so I am going to 50 mg twice per day. I've been doing it about 3 weeks. My measurable symptoms are relatively minor.
and u have lukemia but only take 50 mg at one time and how do you get 50 mg capsule ? Thnks
• in reply tozawy
Can you tell us why you think it is mercury poisoning, and what youre doing about it? Thanks!
zawy• in reply to
A 6th grade teacher left a bottle of mercury in a cabinet. When bored, I would take it out and roll it around in the pencil holder on the top of the desk. Remember those pencil holders? For elemental mercury, its the vapors that do damage. Traces were sure to remain in the wood and on my fingers. The effects were severe but no one was able to recognize the symptoms and I did not realize the cause of my problems the following year for many years. At that time chelation therapy would have been a really good thing. But once it gets in the brain, there is little proof that anything can remove it and some say the half life in the brain is 27 years. But I do take alpha lipoic acid. I realized what had happened to me about 2 decades later while researching mercury toxicity for my job. We experimented with a mercury monitor and what happens when there is a spill. Mercury is "not cool". Every atom of it that gets in the brain does damage. There's no safe level, just levels where you can't measure the damage.
Zawy, have you noticed any improvement by now? It has been 2 months since your last update... my mom is thinking to give this meds a try without doc's approval..
Hi, my condition is not confirmed by an MD as PD. I have all the symptoms (lack of smell, losing balance, can't sleep, anxiety, depression, and classic but minor tremor with the correct speed in left thumb and forefinger at rest which goes away with alcohol. Essential tremors begin when my calorie intake is low. My biggest problem, that I have not been able to confirm with other patients here, is a "buzzing" feeling in my head when I wake up in the morning and makes me really slow, out of balance, and out of focus. It might be a general inflammation in the brain, or related to an old inner ear injury.
Since I am not confirmed PD, anything I say should be taken with a grain of salt, unless I had a great response. I only bought enough for 1 month that I spread out to 2 months by combining with food which is supposed to nearly double it. 3 weeks at a full dose is the minimum to detect a response (which I read in one of the news reports on the study). so I took only the minimum to detect a response. My condition has been going up and down and I am doing a lot of other things, so I do not know if it helped. I have not decided if I will get more.
There were two others taking it, and judging from what information I can gather, I believe they are still in the "unknown" state. They are active here, so I would expect them to report if they notice something good or bad that they can be sure of. It is not as safe as the study implies. They used 150 and then 300 mg/day. 400 mg/day in the paper insert indicated nearly the same rate of toxicity as the higher doses. It does not seem as dangerous as other "chemotherapy" because it is not the type of "chemo" people are familiar with. People take 800 mg/day a day for years, if toxicity does not occur.
There is still a big question mark with it, at least until they publish something scientific people can read. They really were not supposed to go public before publishing, and I did not like that 2 of the 12 patients were financing it and that they showed two before and after videos, but did not do the videos where a viewer could see if what they were claiming were true.
I have Mercury poisoning, what can I do to get rid of it
Steve
You need to get chelation therapy from a doctor. If it occurred recently, you need to do it immediately.
A Dr did edta IV chelation on spouse and it pushed him into dementia lewy body with parkinsonian symptoms. Pulled toxins and fat soluable drugs out of fat tissue and redistributed them. Do your homework on chelation. There are other options. Chorella...too many of these drs are doing provoked challenge test. Normal Medical practice is non provoked. Just pee in a cub and have it tested. Provoked showed high...lead...mercury...aluminum. Got chelated per dr recommendation . Declined. Demanded non Provoked....ZERO problem. Should not have been chelated. Period.
Retested Provoked and back high again. Come to find out the Provoked solution says in small print may make levels higher than they really are. In other words the solution to cked Provoked actually makes your levels high. Don't make sense. But believe me makes sense to DO NOT DO CHELATION. TOO MANY UNKNOWN DANGERS on past medications you took and pesticides in your tissues. Best to leave them where they are. Chelation Will redistribute them and they will get to your brain. We are devastated.
Are we to understand that you have leukemia? And PD? Did your doc prescribe off label use of Tasigna and if so, why are you using stuff from a third world country? Why are you using it contrary to directions?
I do not have leukemia. I got it from a 3rd world country because it does not cost so much. I am using it against directions in order to get the same dose on a smaller amount because the cost is so high. A PD patient in a 3rd world country might pay $4000 a year instead of $24,000 or so here (150 mg a day). By using it against directions, my costs might get down to $1,000. I do not use American doctors unless I have to. It's cheaper to fly to another country and get medical care than it is to pay a deductible, copays, and the 20% not covered. It's a trend that has been increasing the past 2 decades. I get more time with the doctor to discuss things if I do not use an American doctor. I typically know more about a condition than doctors before I go and visit them. But there is a lot of wide perspective they have from seeing a lot of patients that I can't get from reading the new research, which they typically are not very familiar with. Fortunately all the research the doctors have access to is publicly available on pubmed. Fortunately, we still have enough freedoms and rights to take medication with or without an American doctor's permission, as long as it is not a controlled substance. It shocks Americans to find out that in much of the world you can walk into a drug store, ask the pharmacist what they think you might need, and they sell it to you right there at 1/6 the cost of the pills here, all legal, even for Americans. That's the degree to which we've given up freedoms most of the world takes for granted. We're told it's for our own good, but it's not a coincidence it's also why health care is so expensive here and the largest lobbies in the U.S. are by for health care, especially pharmaceuticals. We're still free to take pills in foreign countries, probably even take controlled substances as long as it's legal in the other country. It would be good to have a prescription from the foreign doctor before carrying pills back, and I would not bring back a controlled substance even if it is legal.
There's a similar situation with books and movies. The copyright holders make them cheaper in other countries where no one would pay the high costs we endure here.
I open the capsules and drop 1/4 of it into my mouth, twice a day.
for what? do you have PD? do you have symptoms? if it is so mild that you don't have to take carbi/levadopa, then why are you fiddling around with something so potent, so unknown in such a cavalier manner? third world/unknown quality/wrong dose/no real knowledge as to how much your intake of counterindicators actually raise the efficacy? if you aren't sure of the quality,then why are you spending anything on it? according to you, you could be spending a couple of thousand on cornstarch. i can see that the money is an issue and we have taken advantage of traveling for treatment as well. if we thought the studies were complete enough and the results sufficiently beneficial to try it, we would be on a plane as well. but neither is true yet. the study is only on 12 people and it wasn't for efficacy, it was for safety.
that is all true about the control our government has over our ability to take meds....alll in the name of safety, so they say.
I have plenty of mental symptoms (sleep, anxiety, smell, and worsening balance that is hard to measure) that could be PD or latent mercury poisoning, but my finger tremor is not great. The safety of it is good enough for me and my symptoms are bad enough that I figured the risk is worth it. I am getting a smaller dose than leukemia patients who take it for years. I am currently working on verifying the quality. I only got enough of it to determine if it has a noticeable benefit. Their exclamations over the powerful effects were enough to make me (and apparently others) want to try it without waiting 10 years for phase 3 trials to be published. Obviously I do not trust the medical industry, and I've posted criticisms and cautions about the nilotinib "advertisements"...their patent, 2 patients funding it, only 12 patients, no control group, nothing published, only supposed to be looking at safety, and the before and after videos not demonstrating the claims. Even with my modifications to the instructions I am not overdosing, certainly getting less than a leukemia patient's small dose, and the author's theories indicate a smaller dose than they gave in the phase 1 safety trial will have an equal or smaller benefit.
HI, zawy. You wrote: "Obviously I do not trust the medical industry, and I've posted criticisms and cautions about the nilotinib "advertisements"...their patent, 2 patients funding it, only 12 patients, no control group, nothing published, only supposed to be looking at safety, and the before and after videos not demonstrating the claims." Can you direct me to the spot where you got this info? I have read a lot of articles about this study, but did not see anything about "patent", or "before & after videos". Also, i wonder why not or when the study's detailed results will be published. Obviously, I am interested in this drug, and we are discussing it with our Neurologist for use on an off-label prescription basis for PD, but want to learn as much as I can first! Thanks !
The videos will look simply like a news video and are "everywhere". The remark that two of the patients funded it was something I stumbled upon that I would not be able to easily find again. The patent is here, with moussa and Georgetown university names on it:
google.com/patents/wo201316...
He has about 4 paper publish on mice, but the human data is not yet public. It was presented at a neuroscience conference and the Georgetown publicity machine made it hit the airwaves the same day, I believe. Someone might be able to find the paper, but I couldn't.
Any intellectual dishonesty always stands out, and it seems to usually coincide with a profit motive. Here, the only thing I can find (other than disclosure before publishing) is Moussa claiming the PD doses are a lot lower than the leukemia doses, and therefore safer. This allows him to market the patent as "lower than leukemia", and yet keep as high a dose as possible in case he is wrong about "low dose". A common dose for leukemia is 600 mg/day and the PD doses went up to 300 mg/day. (The patent allows for up to 700 mg/day.) Half as much is not a "lot" lower. A lot lower in my mind would need to be 1/4 or less. A "safely lower" dose would be 1/10. People still argue if 1/4 aspirin per day is safe.
The nilotinib idea has spread like wildfire in large part due to Moussa saying "much safer because it is a much smaller dose". It's true that the doses are smaller. A lot smaller and therefore a lot safer is not true.
However, patients were claiming noticeable difference in 3 to 5 weeks, which appears to have been at 150 mg/day. And the safety trial may have needed to go to the high end of doses simply because it was a safety trial.
Thanks again. I look forward to any further info you might get. I wonder ... why hasn't the study details been released. ? Is there a typical protocol for releasing such data so that others might review it?
Sure would like to talk to the participants !
Some of the news articles gives at least 1 full name. I have some questions, but I do not feel at liberty to call.
It normally takes a long time to put together a paper and publish the results. The question is why did they hit the news already? Are they too greedy, or does it really work that good? The leukemia it is used for occurs in the elderly, 5,000 new patients per year. Why have MD's not already noticed Parkinson's cases getting better from it?
As a reminder, a "cure" for Parkinson's was discovered 20 years ago, with a safety study almost the same as this one:
ncbi.nlm.nih.gov/pubmed/778...
It was known even in the 1980's but mad cow disease eliminated the cow-brain source of GM1.
This researcher JS Schneider keeps doing clinical trials (he has 235 papers, most on PD, about 27 on GM1), and the results are always the same: patients were better than at the start of the study for as long as they took it:
ncbi.nlm.nih.gov/pmc/articl...
He first looked into it in 1989 in mice
jimmunol.org/content/176/2/...
The first research on this for PD was in rats in 1983....32 years ago!
ncbi.nlm.nih.gov/pubmed/614...
The only reason GM1 is not available to us now is because it requires investment in flocks of sheep, so the pharmaceuticals were not interested. It will remain a problem because with genetically modified sheep, then can still only get 1 or 2 g per brain, and 0.2 gram is the daily dose used in the trials, 1 sheep brain per 10 days. There is a PhD vetenarian and his M.S. degreed wife who are licensing the raising of the genetically modified sheep, now over 4000 ewes:
glycoscienceresearch.com/ab...
And here's the punch line: nilotinib may be working the same as GM1. Nilotinib's cousin imatinib "upregulates" GM1, so if GM1 is not available in enough quantity from the sheep, it can be combined with nilotinib to amplify it: "Inhibition of Bcr/Abl tyrosine kinase activity by imatinib induces a high surface expression of GM1"
jimmunol.org/content/176/2/...
Thanks again. Can you comment further on the greed aspect ? Why would early publicity generate monetary gain? To make money don't they need both patent and pharma Company for manufacturing distribution? How would early Publicity enhance that?
On another note, I raised a bunch of money for the Michael J Fox foundation and in early January I will have a telephone conversation with the person at MJF who knows most about NILOTINIB. I'm putting together a list of questions in writing so that the call will be as fruitful as possible. I'd really appreciate your forwarding to me any questions you think I should pose to them.
Perhaps you've already been in touch with them?
Also let me know if you want a list of the questions I've come up with so far. By the way if you prefer to email, mine is rrunk@optonline.net
It makes typing a lot easier for me.
I do not know how a patent will be a source of profit if it's describing an existing drug for off-label use. Since they filed it, I assume it must enable them to get something from the manufacturer.
By creating a news storm, they greatly increase their access to public funds and speed for further study. Obviously MJF will now have to send them a lot of money. The NIH and other government sources are not influenced as much by this type of publicity. I would think it's a risk to their good standing in the research community to be jumping the gun like this.
Also, it's a way of pre-recruiting clinicians in future trials. It's a lot easier when they come to you in order to be involved. They come to you sometimes because they know you've successfully hit the media gold mine and they'll get paid well for getting their patients involved. That's why human studies are so expensive: the doctors and their institutions have to be paid a lot of money to be interested.
Concerning your contact with MJFF, I would only let them know that they should keep in mind the combination of GM1 and nilotinib may be the best route (since nilotinib amplifies GM1's benefits) until GM1 is more readily available. GM1 is a heck of a lot safer, already proven, and it is doubtful there will ever be anything better short of something like stem cells that can regrow neurons.
Ask them if nilotinib is going to be less expensive than GM1. They will not know, but it puts the onus on them for explaining why they would support nilotinib but not GM1. Have they assisted the sheep producers in getting FDA approval?
I'll email you just so you have my email.
rrunk, could you ask when on average the patients in the safety study began to realize the effects of nilotinib? How far into the 6-month study?
They said 2-3 months. So hang in there and let me know how things progress. My wife starts taking it in 2 weeks. Will keep you apprised
If you send me your email I can send you notes fro our telecon with one of the participants in the study who is still taking Tasigna. mine is rrunk@optonline.net
Hi,could you also kindly send me the notes.this is my email,youraliismail@gmail.com.
I'm not familiar with nilotinib, but I think you all are saying it is a chemo drug at a lower dose. So you Dr gave you a rx for this?
Nilotinib at any dose is a chemo drug that controls chronic myeloid leukemia (CML). One safety study saw a marked improvement in PD symptoms when the participants took a low dose. However, there is much the study did not take into account. I have CML and had ben taking 600 mg. a day, but I went down to 300 mg. a day with the permission of my hematologist. I did not see any relief of my PD symptoms.
Regarding the GM1 studies and published effects, by my cursory reading it appears that the results were not as dramatic or "reversing" as those claimed in the Georgetown study. Do you agree??
That's true as Gm1 reverse the condition only a little. But reversal should be minor in the best of drugs since the neurons I would think are mostly dead instead of recoverable. GM1 is a bird in the hand in terms of research and nilotinib is still two in the bush.
One day I researched herbal supplements to find if there is a natural equivalent to Nilotinib and I found something very, very close. Actually xanthohumol, from beer hops, has chemical action similar to imatinib. Here is the thread and different product options are also included. One of the most interesting facts I learned is if you have cancer, you should not be taking N-acetylcysteine:
Clinical trial phase I I Is currently enrolling with 75 patients thru Dr pagen at georgetown University
Holy Toledo.
Yeah and he doesn't even know if he has PD. A couple of sinemets would tell if he had PD or not.
The nilotinib can improve several neurological diseases that have PD features. Azilect worked pretty good. The sinemet response was not positive on two sequential doses, and I'm not willing to take it a month to find out. The tremors, although mild, are hard to miss, and they go away with alcohol, as predicted. No doctor is sure of diagnosis for any early-onset mild case of PD, sinemet or not. Nilotinib is supposed to be best for mild cases, so I want to test it ASAP. So why you be hatin?
BTW, the niacin for your husband could be a really bad idea. I've been a Hoffer fan myself, and I realized niacin can be important in preventing hallucinations, but some things I read made me to frightened to take niacin for possible PD. Of course the medical establishment would not approve of the high dose niacin, so your complaints about my fondness of 3rd medical resources and not following the directions (even off-label use is not following directions) seems ironic.
well, the niacin didn't come from India or Nigeria. actually, the docs didn't object; they were just bemused (read: ignorant). as soon as the MAOI got out of his system, his 3000mg/day need to control hallucinations stopped so we dropped down to a few hundred. his cardiologist has approved 500 ER a day but we don't use it very often. now we just are stuck with compulsions from the drugs. do you have any silver that needs polishing? or closets that need organizing? or clean pots that need re-cleaning? call us. it drives me nuts and has turned me into a shrew.
I would not bet the niacin did not come from India. My guess is that it came from China. Same thing with drugs: a large percentage of them actually do come from India.
zawy I know I'm going back quite a few months but was just wondering why you thought niacin was a bad idea for Donzim s husband?
Also, Donzim - I'm confused about your comment 'as soon as the MAOI got out of his system, his 3000mg/day need to control hallucinations stopped' Can you explain what that means?
Thanks.
The niacin may really help hallucinations, but ti may also be risky for PD. The information is sparse, but it was enough for me to not consider taking it anymore. Iwas not taking it for hallucinations, but it has a lot of other benefits.
There are several forms of niacin and I use nicotinamide/niacinamide. Unlike niacin it does not affect cholesterol levels nor does it cause flushing. It, in several models, has been shown to be neuroprotective for PD along with alzheimer's, MS, Friedreich's ataxia, schizophrenia......and it has anti-anxiety, anti-microbial and energy producing characteristics. It is a precursor to NAD and NADH which are vital for bodily energy production.
[Protective effect of nicotinamide in a mouse Parkinson's disease model].
ncbi.nlm.nih.gov/pubmed/224...
Here is another example of what it can do in a UVB skin cancer study:
Oral nicotinamide protects against ultraviolet radiation-induced immunosuppression in humans.
"Oral nicotinamide, at doses of either 1500 or 500 mg daily, was well tolerated and significantly reduced UV immunosuppression with no immune effects in unirradiated skin."
Most importantly, niacinamide is converted into NAD and it peaks 1 hour after ingestion then returning to a slightly higher level than prior to ingestion:
carcin.oxfordjournals.org/c...
"Oral nicotinamide as a single 500 mg dose increased blood NAD levels. Baseline NAD levels were taken at the time frame of 0 min (immediately before nicotinamide tablet ingestion) in five volunteers. NAD levels increased 30% above baseline within 60 min of ingestion (mean ± SEM; paired, two-tailed Student’s t-test; *P = 0.035), but by 90 min there was no significant difference from baseline (P = 0.59)."
Oral nicotinamide is used in many clinical studies at 3,000 mg per day and the upper limit is 6,000 mg per day. A doctor in the 50's noted that the body can absorb 250 mg every 1 1/2 hours so it can be taken throughout with or without food during the entire day. Taking such a low dose should not cause any physical consequences.
Can Niacinamide Cure Alzheimer's Disease?
"If possible, taking 250 mg. every 90 minutes, 12 times a day seems to be the best method."
earthclinic.com/supplements...
Some studies about niacin and PD:
Niacin improved rigidity and bradykinesia in a Parkinson's disease patient but also caused unacceptable nightmares and skin rash—A case report
tandfonline.com/doi/abs/10....
A novel treatment target for Parkinson's disease
"We hypothesize that GPR109A message and expression are up-regulated in individuals with Parkinson's disease (PD). GPR109A is a high-affinity niacin receptor. Niacin is a precursor for NAD–NADH which is needed for dopamine production."
sciencedirect.com/science/a...
Thanks for all the info silvestrov It is pretty much as I understood it from your previous posts on Niacinamide (+ extra detail), hence why I have just placed an order - this, to replace the NADH which I find is too expensive.
Without a doubt niacinamidenicotinamide is the most interesting vitamin I have read about. I ran out of niacinamide for a week between orders and felt less energized when I went for walks. I keep finding different studies in which it proves its effectiveness in (fill in the blank) disease and the latest article was about skin cancer. When I read that article I knew I finally found the graph I was looking for that showed evidence for taking it at low dose every 1 1/2 hours over the course of an entire day.
Here is another reason to take niacinamide:
Wikipedia: "Small intestinal bacterial overgrowth is one known cause of nicotinamide deficiency.[8]"
en.wikipedia.org/wiki/Nicot...
Small intestinal bacterial overgrowth in Parkinson's disease.
"SIBO was not associated with worse gastrointestinal symptoms, but independently predicted worse motor function."
ncbi.nlm.nih.gov/pubmed/246...
As I stated before, niacinamide is essentially an unrefined antibiotic and its analogues are the #1 and #3 tuberculosis antibiotics.
PS/edit: Then again perhaps I should try the time release form of niacinamide in the future. It is 1 tablet per day and contains 1,500 mg niacinamide:
swansonvitamins.com/source-...
Thanks Sylvestro for bring up niacinamide " Any condition associated with poor mitochondrial function, such as chronic fatigue syndrome, any organ failure, and any neurological disease such as Parkinson's disease, may well benefit from high doses of NAD. "
Zawy,
Thanks for the usual thorough literature review, coupled with your personal experience, thoughtful analysis, and unselfish sharing of your findings.
I appreciate your contribution, and welcome anyone who shares your approach to finding, discussing and implementing solutions. Please keep up the good work.
Is your doctor an md?
Is that for sure about sinemet? When I took sinemet, I felt like I went from the rinse cycle to the spin cycle. It was pretty scary. I couldn't form words and my tremor spread from my right side to all my limbs. But my neuro still feels like I have early-stage PD because the tremor on my right is so severe and persistent, my balance is off, I've had a few bad falls, and my DaTscan showed "abnormalities" increased since my last one.
Sad replied about people who think they may have PD taking meds that might help PD. that they might not have. Meds from 3rd world places that may be corn starch to treat PD. they may not have. Want the freedom to take meds for diseases they think they have.
Why would you go half way around the world to get Meds that you think will work on the basis of a limited study by the same people you think are only in it for the money and don"t care about finding a cure yet are doing the study.
This just don't make logic. You don't trust the people who test the drugs but you will go to the end of the earth to get them.
You don't trust the people who test and make the drugs yet you will walk in to a drug store in a third world country and buy meds from a person claiming to be a pharmacist
who may just be making the meds in the back room.
I just don'get it
does any one else see it this way
Any feedback from those taking tasigna and effects on parkinsons as yet? The First Lady to post? Also why the conspiracy theory re: tasigna. In all clinical trial 1 studies it is small and no control. Re: no paper published. When it's scientific you normally give a presentation then your paper is published. Why this hasn't happened I'm unsure. But what's to be gained by anyone promoting a super expensive leukaemia drug? The parkinsons market is so small compared to other diseases.... I'm just asking this as I don't know.
Apart from tasigna does anyone know any other drugs looking good
And not light years away. My mum is 76 and yes we are desperate and to be honest parkinsons is a bastard of a disease ripping us all apart... Through us some hope ffs
Uggybigboots, if you send me your email I will send you notes from a telecon I had with patient in the Georgetown study. My email is rrunk@optonline.net
would you send me your notes from the patient in the georgetown study?
ed@tuttle.cc
The tasigna was not touted to 'cure' PD. It was given to unfold the protein folds which cause PD dementia, which apparently happened in some people on the small safety study which was done. It was used in small amounts.
Thinking about it as dementia is getting worse and that's the point of that drug.
i was taking 600 mg nilotinib for 5 months to my CML . but i have a lot of hair loss .im worried and dont know what to do :((((((
do you have PD
Hopefully will be on it soon. My neuro won't prescribe. He is young and very smart, the best MD I ever had. Says it's not approved. Like others I'm not waiting min 5 yrs or more. What's my condition gonna be 5+ yrs out? Study MDs say better results w/ Tasigna taken earlier in the disease. Problem is who (MD) will follow me? Neuro said no, guess I'll be talking to my family MD.
My neurologist will only see me to treat signs and symptoms of PD. Does not want to be part of Tasigna off label. However they still want me in their Boston Scientific trial for DBS! Less Tasigna of course! DD done, going the Tasigna route.
Family Dr and cardiologist on board. Searching for a neurologist.
I'll provide more information as things develop.
Did you find one? Dr in Atlanta does...oncologist but neurologist oked it first
Found a neurologist who will follow me and a Dr who will prescribe it. Initial blood tests and EKG scheduled for next week. Setting up testing schedule per drug companies recommendation. Not looking for results until 3-4 months. I'll post at that time.
Lucy would you mind sharing name of Dr in Atlanta who will prescribe it? Have you been taking it? How is it working?
Caution...alert...edta IV chelation pushed my spouse into dementia lewy body. Pulled toxins...chemicals...and pesticides out of tissues and compromised brain. Dr was remorseful. We are broken. Medical help took our life...
Phase I I tasigna clinical trial enrolling now
I tried to get into the phase 2 study at GU. They wanted locals due to all the follow ups. Long story short, I have an appointment in two weeks with a family medicine Dr. Cardiologist and neuro also on board. Labs and ekg plus baseline neuro exam being scheduled. Hopefully I'll be on Tasigna in 3-4 weeks. I'll post as soon as I have something to report.
Did you ever get on Tasinga?
Yes started June1. Had preliminary ecg and blood work. I take 200 kg capsule usually between 3-4 am. Instructions are to take on an empty stomach, that works for me! I've been told not to expect results until after 4 months. I'll post results o/a Oct 1. Cardio said after 3 ECGs doesn't need to see me until March 2018. Bloods fine, doing on a monthly basis. No problems so far.
How is it going Lucyandluke?
Lucy - how is it going with the Nilotinib?
Today marks 101 days that I have been on Tasigna. I had major difficulty finding an MD to off label prescribe, that's all history. Time for some good news.
Tasigna works! I am absolutely confident that my positive changes are the results of this drug. Today marks 101 consecutive days being on Tasigna. Noted changes:
1. Balance in the shower is much improved. Don't need to constantly hang onto the grab bar.
2. Able to go up/down stairs normally one at a time, no more half steps.
3. Constipation gone.
4. Pill count has dropped from 18 to 14 per day. Some days even down to 10. (Carb/levo ODT 25/100). I also take Selegiline, 5mg twice per day, Lovastatin, 40 mg once a day. There have been times when I've gone as much as 10 hours between doses! No way, in my mind can this be a placebo effect.
5. Sleep improvement big time. Awake 3-4 times each night to urinate. Can get comfortable and get back to sleep.
All these changes have taken time, but in my opinion, are the results of my Tasigna use.
I will post more as things develop.
Take care and keep moving.
that is amazing. wish I could find it off label here in TN
Finally after months of searching I found a family Dr who wrote the prescription and a neuro who agreed to follow me. I had to sign a hold harmless agreement as did my wife and adult children. Good insurance is needed as the monthly cost is $4,500. Novartis has a discount program based on income. Medical monitoring (heart and bloods) is required prior to and during Tasigna use. Except for a little hair loss, I've tolerated Tasigna very well.
Good luck and keep moving.
Wonder if my insurance would cover it since it is off label and I don't have Leukemia. How did yours justify it? Or is it a non-issue if you have a prescription by a doctor?
It is on my insurance company's approved formulary list. They covered it in full. I have read that off label prescriptions amount to 20% of all written prescriptions, so it's not an uncommon practice. I have a written prescription, it was a non-issue with my insurance company.
Everyone needs to perform their own due diligence both financially and health wise. Tasigna is not for everyone and the jury is still out on this one. The FDA verdict is expected when? Eight + years from now? I decided over a year ago I'm not waiting.
Good luck and keep moving!
My father has been on Tasigna 150 mg for over a year now. He takes 150 mg per day for the first year - 1 pill per day at night before going to sleep. Due to cost, he is down to 150 mg every other day for about 3 months now. My mother said that 1pill every other day doesn't seem to make a big difference compare to taking one everyday.
Question - Thinking about buying the 300 mg and cutting into half so he can take it everyday. Does Tasigna go bad if open for long period of time? Instructions said that it should be taken within 15 minutes of opening.
"If you cannot swallow Tasigna capsules whole:
○ Open the Tasigna capsules and sprinkle the contents in 1 teaspoon of applesauce
(puréed apple).
Do not use more than 1 teaspoon of applesauce. Only use applesauce. Do not sprinkle Tasigna onto other foods.
○ Swallow the mixture right away (within 15 minutes)."
What action does nilotinib have in PD?
Been taking 150mg per day since Feb 2016, i.e. 21 months. Can say we see no dramatic results in either direction. The disease is still progressing. Question is ... has it slowed the progression?? Don't know. One way to find out is to stop taking it, but we're afraid to do that at this particular time.
I wish we had more precise information on how dose dependent the effectiveness is. I've been at 95 mg twice a day now for 95 days. it may be that in just the past week and beginning to notice a slight difference, but it's too early to know for sure.
Any thing to report since your post 2 years ago. I hope your doing ok.
I have recently figured out my seeming lack of response and disappointment the 1st couple years is probably due to my being on too low a dose, either 125 mg/day or 150 mg per day. Even so, I believe even that lower dose probably slowed the progression, but of course there's no way to know.
Anyway, since it was reported a couple months ago that the sweet spot dose for it is 200 mg and I increased to that dose a couple months ago, it has relieved my constipation. That is clear and by itself worth the money (for me, $700 per year) and hassle (being careful not to kill myself.)
My neurologist said each of my last 2 visits (which covers the previous year) that I have improved slightly over the previous visit, tho I can't tell and it has not reversed my symptoms in the dramatic way that was reported in the initial Georgetown trial.
I have enough for probably 18 months, so in about 9 months from now, I will start my quest for another batch.
Today is Dec 5, 2017 and is my 187 day of being on Tasigna. This is a six month update. See my previous posts.
I have not been able to repeat all of the many benefits I previously reported at three months. Balance and gait have not improved. Sleep is only marginally improved since I started Tasigna six months ago. Sinemet daily usage is averaging 12 daily. There have been times when I can go 10 hours or more between doses. This stretch has always been at night not during the day. One time I went 14 hours. There have been days, not many, where my pill count dropped to 10 or even 8.
As stated before, PWP have had this disease for decades, so I'm not expecting a big turn around in six months with any oral medication.
I can't say I'm feeling any better or any worse. I'll report again at 9 months or sooner if noteworthy.
Take care and keep moving. Happy holidays!
Jim
Hi I was diagnosed almost six years ago with PD. I was thinking or hoping that Tasigna could be a means to slow or halt progression until something better comes along. Until recently my symptoms were more of nuisance with left foot tremors that were corrected with Sinamet. 4 times a day. However over the past year I get dystonia in that foot in morning when I wake up. but the past couple of weeks it’s progressed to where is pretty much 24/7. It’s very uncomfortable and make walking and difficult since I play a lot softball and golf. So my question is there anyone using Tasigna with similar doses that are being used in the current clinical trials having any luck slowing or halting progression.
Thanks for the update
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