I have Parkinsons. I recently went in for my annual neurological checkup. After reporting in on symptom progression I expressed interest in knowing more about Nilotinib. To my surprise my physician really seemed to know little about it and dismissed the subject with the statement that "there wasn't any buzz about it at her last medical meeting." I guess I came away from my appointment with a number of thoughts:
1. Should not one's neurologist "be current" on medical research and be prepared to answer a question like this ... especially as Parkinsons is one the most prevalent neurological disorders?
2. Are neurologists treating patients with some of the drugs (particularly those which appear to be in later testing (Phase III) that are being shown to be neuroprotective? What is reasonable to expect from your doctor?
I'm not looking to be "tutored" on the current state of research about all drugs that may be effective in treating Parkinsons. I find, as a layperson, Clinical Trial reports to almost undecipherable. I also believe that neurologists are very conservative in treating Parkinsons patients. With all the developments in drugs - many of which are prescribable and some even available OTC . . .
Drugs worthy of consideration in my mind are inosine, israpipine, LDN Low Dose Naltrexone, NAC N-Acetyl Cysteine and Nilotinib.
QUESTION: 1. Do you think I am unreasonable in my expectations?
2.Do you agree or disagree that physicians should prescribe drugs mentioned? (or generally be amenable to prescribing beyond the old standard drugs that only seek to get dopamine into your brain?
Snapped this photo from my patio last night. I live on an Island and don't spend all my time fretting about Parkinsons. Some of the time is being overwhelmed with gratitude for living at this time in this place and being able to still sail my boat. Just wanted to share this
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FMundo
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Re your Neuro, I usually predict behavior on one's pattern of past behavior. Wow, thanks for that photo. Your anxiety (if any) must be very low...........you live in paradise. NO need to respond.
What an amazing photo. You live in a lovely setting.
I'm very new to having Parkinson's and I'm just wetting my toes right to learn about the phase in my life that I'm going into so honestly I didn't understand what you were saying about the meds. But that picture...OMG...how gorgeous.
Virtually every night my wife and I look out on that view as we have dinner. It seems each sunset is different. It reminds me of how precious each day is, and how blessed we are to be here.
Of course it is highly desirable for your neuro to be up on all the latest treatments, but the reality is, it is frequently up to we patients to be become the experts. So the question becomes whether your neuro is open to new information you might bring and able to collaborate in partnership with you.
As to the meds, I imagine most physicians would be very reluctant to prescribe nilotinib, which can cause sudden death. About half the patients have skin reactions, some serious. Plus it costs $thousands/month. Leave that one for the seriously ill.
Likewise raising urate levels via inosine is a terrible idea, IMHO. Take a look at the stats for increased risk of stroke, heart attack, and kidney failure due to elevated urate levels. No thanks.
OTOH, NAC / N-Acetyl Cysteine is inexpensive, well tolerated, and good for you. I neutralize the acidity by adding 25% by weight of calcium hydroxide.
LDN has an excellent safety record and so is another viable option.
Sounds like I should be meeting with you and not my neurologist. I am taking LDN. I knew about the cardiac issues with Nilotinib- and clearly one should not take the drug with pre-existing cardiac problems with self or family. Cost? 45K / Year but in Canada that drops to 12K, which is not chicken feed, but I suspect if the efficacy was established in a large scale test, there would be a stampede of PwP's, prepared to sign up. Do you have any clue why there have been no further tests of the drug following the remarkable results with 10 of the first 12 PwP's with advanced Parkinsons? Did you possibly listen to the MJFF webinar on the subject? I Can't figure out, that if they had nothing to say or no concise plan for future testing, why they bothered to put it on!
Jumping ahead a bit. the fundamental issue I wish to explore with other PwP's is why neurologists are so timid about being proactive in prescribing drugs that appear to be neuroprotective, that are well along the testing pipeline - that appear to be safe and to slow Parkinsons? Why are we alone responsible for being knowledgeable about these advances ? . . . Where is the sense of innovation and urgency that there is in the treatment of Cancer?
Is it the fact that its a gradual progressive illness and the way symptoms present themselves? (that you gradually fade away as opposed to go out like a meteor) ? Is it a personality thing that somehow manifests itself in the selective process as medical students decide to become a neurologist instead of becoming an oncologist? Are they fearful that they'll be sued because "we died of Parkinson's anyway - after they prescribed a drug off-label ?"
Perhaps I have it wrong, that neurologists are offering neuro protective drugs and well as dopamine to the brain medications.... and I just should go shopping. What are other people's experiences? What medications are you being offered (of the group that I mentioned in my original posting)?
Is it OK with you if your physician isn't at least knowledgeable and prepared to discuss with you drugs that are in the pipeline of testing ?
I live out in the middle of nowhere. I do my own research and I am thrilled if my doc merely prescribes what I need. NAC is over-the-counter as is mannitol which has also been alleged to be neuroprotective, so I am working with these for now.
I believe a phase 2 trial for nilotinib is planned for next year.
Good news that at least there is a trial planned. Any details about
who is funding it ?
what the parameters are ?
who to contact regarding being a participant in the trial ?
The bad news is, irregardless of results of the trial, since a whole year has gone by since the first one (combined with the fact that one important goals of the trial, in addition to test efficacy will be to test "long term effects of treatment) it will be many many years before it is concluded. It appears that the urgency of getting on with the testing has somehow been lost on the part of the research community.
I managed to get a legit prescription of LDN only because I went to a naturopath and was already taking the medication prior to discussing it with my neurologist. My sense was she knew nothing about the drug prior to my bringing it to her attention.
Increasingly I want a doc that is in the game (on top of current research) but has their eye on the ball (and sees the stitching). Willing to throw a pitch here and there.
Which drug had the remarkable results that you mention?
I am doing my own research going through things one by one. I find my nuro very set in his ways. I told him disprin helped and he said he had no idea why, yet in an hour my sister in law found some research showing a positive effect in rats with Parkinson's.
So far azilect, magnesium, B12 and disprin when required have improved my symptons hugely.
Next I am adding NAC.
My Canadian husband would be so jealous of your view!! Just lovely.
Sounds like you're like me.... want to take things into your own hands and move forward (following some personal research). I look at Parkinsons realistically as the degenerative disease that it is. Its quite easy - indeed natural - to be lulled into the thought that "I'll never get there" (seriously i'll) that symptoms are stable, etc etc. But PD continues and its a steady deterioration. Best you can do for now is make the downhill less steep.
On the MD side, it seems that its much safer and comfortable (overlooking the plight of their patients) to stick with the tried and true. They are waiting for the "silver bullet" which may be a long way off - too long for PD patients today. What comes to my mind is a phrase blasted over outdoor speakers at my daughter, training to be a Special Agent, who was attempting to drive a car through an obstacle course as fast as she could (and evidently not doing a good enough job at it). "Penny, drive it like you stole it ! ! !" I wish more neuros would " prescribe as if THEY HAD IT."
I am interested in NAC. I currently take LDN (Low Dose Naltrexone). I am experiencing a very slow progression of symptoms. I have an increasing interest in NAC and may look further into that as well.
The drug Nilotinib (by Novartis) was given to 12 people in a test started about two years ago. They all were fairly advanced with PD. One person dropped out, another has a serious cardiac event (they had a previous undetected/disclosed heart condition) I think they were given a stent.
The other 10 reacted very positively (all improved). Some started talking again, one started walking. The drug is used in treating Leukemia - so its an anticancer drug. Currently incredibly expensive. The dose was very low relative to what is given to cancer patients. After 6 months it was withdrawn from patients and they resumed their downward decline. So it appears safe, to have efficacy and would likely need to be taken "for the duration."
It.s a leukemia drug that has recently been tested for safety in a small, phase I clinical trial on about a dozen Parkinson’s disease patients. The study had positive results that certainly warrant the continuation to a phase II trial, however it is too early for patients to seek treatment outside the setting of a clinical trial. The study was very small, and it was not placebo controlled. The clinical trial process was designed primarily around patient safety, which is a critical issue with a chemotherapy drug, and this process should continue and more systematic evidence needs to be collected before we can truly understand the impact of this druG
This is national Parkinson org advice.
Personally if my doctor was prescribing it id be wondering why , what was he getting out of it.
My information is that approximately 200 are taking the drug on their own. Evidently they do not share your perspective that it is "too early to seek treatment outside of a clinical trial." I am inclined to agree with them.
Its a "risk of the unknown" . . . but not entirely as the "safety tests" (albeit on a limited group of people for a short time - six months, gives an indication that the drug appears to be safe). You need to weigh the risk in light of the certainty that those taking are all facing certain neurological degeneration. Their choice is to take on action and risk as opposed to doing nothing to impede the progression of Parkinsons.
Its interesting that Michael J Fox (in their webinar on Nilotinib sought input on the experiences of those people taking the drug. Unfortunately MJFF has thus far not committed to supporting research on the drug).
I, for one, applaud those people who, following research of their own as well as giving considerable thought and having consulted with others. I am on a search for information from those who are taking the drug as well as for information of any one who knows specifics about a clinical trial for Nilotinib.
, I'm interested that you were able to find out that maybe 200 are taking it,- international figures or just US? I'm hoping they network and share experiences and document to give a richer version of results to add to the scientific trial results.
I guess I come at it all a little differently in that I expect collaborative care with my Drs but just as I may be conservative but you may be a bit more risk taker then I think that range will be in the neuro population and I have to find the one that suits my approach.
"Conservatively estimated that TWO HUNDRED people are taking Nilotinib! I wonder where they are acquiring it, whether with medical assistance or not, orally or by injection. I would guess they are taking it in very "low doses" as were used in initial tests 150-300 mg. It would be extremely valuable for there to be some centralized point for collecting information on the outcome of this therapy. This information, if collected could be shared YEARS before results from Clinical Tests which are PLANNED to start next year.
ALSO expressed in the article that you cite was the opinion urging that tests on the drug be done quickly to ascertain the efficacy of the drug to counter the irresponsible release of information about Nilotinib that was causing many to take it.
Interestingly Dr. Todd Sherer, CEO of Michael J Fox was one of the authors. Evidently Sherer hasn't acted on his own advice... for TWO YEARS.
In my amateur medical manner I did some googling looking at how this nilotinib works. Eventually I came to a product called Ambroxol which seems to be some kind of cough medicine that apparently helps and may reverse Parkinson's as it does the same as the nilotinib in working with lysomes. Might be worth further investigation. Not available in Australia of course!
I am quite desperate to stop my decline as I am only 52 and need more than 10 more good years!
It has really helped with the tension in my leg and toes, which curled up especially at night. I started it before being diagnosed and it helped hugely. The azilect has helped even more and at times I can have a totally relaxed left leg. What a treat!
I agree. My neurologist is negative about most things . I found a good integrative doctor here in New Zealand who has been more helpful . He tested me and found high homeocysteine levels which he gave me B12 injections for and is always keeping himself informed with the latest . He didnt know about the B1 ( niacin) so I printed out the results of the trial he he was happy to prescribe.
Deaths from Nilotinib have not been reported at the low levels given to this trial group (150 to 300 mg). I take Nilotinib for chronic myeloid leukemia and it was originally prescribed at a much higher dose: 800 mg twice a day (although now I'm way down to a maintenance dose). It's easy to forget I have this disease!
It's an interesting question. I have recently had a review with my neuro and also a visit with my Parkinsons nurse. I really like my neurologist and find him encouraging and positive but very 'on script' when it comes to discussing alternatives which may be off the beaten track. I think this is due to his time constraints (he's allotted ten minutes with me) and the guidelines within the NHS, particularly around safety and cost, and I totally get that. He is positive about the fact that I am proactive and at our last appointment said I was well-informed and asking the right questions (as he ushered me out!). I am seriously considering paying for an appointment with a private clinic that has a neurology specialist - not because I think they would treat me any better but because I'd like some time to ask questions and explore options, because I do feel like I'm on a standard 'pathway' as far as the medical profession is concerned.
My Parkinsons nurses are ultra-conventional. At my last appointment she had a trainee physio with her, so I mentioned the PD Warrior programme and neither of them had heard of it. I would have thought that, given Parkinsons is her speciality, professional interest might have lead her to read about initiatives like this, but apparently not. I am disappointed with my PD nurses and have been from the start. I know some are fabulous, I think I just got unlucky.
So, sadly, unless you have an exceptional neurologist with loads of time and an open mind, I think we have to make the best of the resources available, of which this site is one.
And yes, great pic. I'm off to Gran Canaria shortly for a week and hope for similar views at dinner!
It was the best fun I've had for ages, and a real hard workout. I've been using the book since. I'm seeing my neuro-physio soon (nhs). She's hoping to set up a PDWarrior group. Will let you know how it goes.
Thanks. That's what I'm worried about - intensity. I'm not the worlds fittest person although I exercise regularly and am creeping up to better levels. But my endurance is pretty poor. Oh well. I guess they aren't expecting a specimen in the peak of health.
One problem is Drug development is a very long process.
In this interesting article it says getting enough trial participants is a big problem. It also says only 8% of neuro drugs make it through the process and finally get approved.
Patient recruitment and retention are major bottlenecks in drug development programs, often leading to significant delays in study initiation...
Fmundo, you pose a lot of great questions. I believe, based on my light experience as I am newly diagnosed, that some movement disorder specialist neurologists ( I wouldn't bother seeing a neurologist who is not a movement disorder specialist) are focused on research and therefore are up on clinical trials - especially the ones who are leading or involved in leading their own clinical trial. Other movement disorder specialist neurologists are focused on clinical care and may not be up on clinical trials. There are pros and cons for each type of movement disorder specialist neurologist. I am an advocate of getting different perspectives and, at the same time, taking care to research personally as one measure in taking care of myself. Stevie3 mentions seeing additional neuro and I understand the logic. Hikoi mentioned the issues around drug development and I think many movement disorder specialist neurologists are hesitant to make a recommendation until a drug has "passed all the tests".
Note clinical trials offer another way to meet with a neuro who is leading the trial (perhaps at no charge) and decide whether you are eligible or able to enter the trial.
I posted earlier on Nilotinib initial trial and was very excited about it and other drugs that are already FDA approved .... aren't they (Georgetown) and perhaps other facilities planning a 2nd clinical trial for Nilotinib? Perhaps you can get involved? I listened to the MJFF webinar and I believe they will include a trial (upcoming) on those newly diagnosed though they veiled their answer as nothing is set in cement at this time. I am interested personally in this upcoming trial as well and have called Georgetown about it (no response yet but I hear they are inundated with requests).
Another interesting topic & one in which the differences between UK & USA are thrown up yet again. Cost is such a huge issue in the US compared with over here. Yes NICE, our health body responsible for getting 'Best Value', recommends some new drugs or treatments despite their high cost due to the product development & safety factors but they are also responsive to product 'repurposing'. This is what I think you mean by licensing drugs already approved for treating other medical conditions: at present they need to go through a phase 3 trial to be licensed for treating PD.
This ties in with your observations about the professionals being reserved or conservative in their prescribing for PD. It would be foolish on their part to prescribe a drug which only needed Phase 3 licensing - a relatively short process - to go on-script. The avalanche of legal actions against medical professionals who are prepared to take risks originated in the US & we must live with the consequences.
I am a trial veteran: I was dxd due to volunteering for a nerve trial 12 years ago by my current consultant who is a gerontologist with a special interest in PD. You get to see the foremost experts in their fields & to mix with other PwP & share the latest news. My PD nurse is fantastic! She attends all the events she can fund & is absolutely up to date with research.
Finally some of the meds you mention - nilotinib etc are under Pase 3 trials in both UK & US. The van Andel Research facility works closely with Cure Parkinson's especially in repurposing.
Thanks for your reply. I'm inclined to agree about costs of medical treatment in the U.S. While I am somewhat appalled at the "10 minutes" allocated for consultations with doctors in your country... medical costs are the PRIMARY reason for personal bankruptcies in the U.S. and the whole medical system here really needs to be socialized.
Would you be good enough to tell me the name of the organization or organizations that are preparing to run clinical tests of Nilotinib? I have been unable to find any. Thanks.
Frank, I couldn't agree more about our medical system in the U.S.!
How you will be treated, to what degree experimentation will be done on you, what medications are accepted for use, is all laid out by the various medical associations that issue licenses to practice, and your Nero is following those rules.
So pretend you are a Motion Disorder Specialist after having spent many years in Universities and Hospitals from BA to DR to neurologist to specialist having spent much money and much time and your patient comes in talking about this new wonder drug he just read about on the internet.
If you wish to be involved with leading edge treatment you should sign on to one of the studies being done. There are many . Try the Micheal J Fox foundation and offer yourself. You will get many relies and offers.
I certainly understand a conservative stance taken by physicians and believe it is justified based on the reasoning you have outlined.
What I don't understand (nor do I accept) is the neurologist whom I've engaged to provide care and consultative support ... when he or she puts on a blank stare and says "I don't know anything about xyz drug". It indicates to me that they are not staying current with what is happening in their field expertise. If they volunteer to look at a study or get up to speed with it, that's one thing. If they dismiss it out of hand, knowing nothing... they have their walking papers as far as I'm concerned.
As far as "prescribing" drugs, that's a different matter. As far as I am aware, doctors are not forbidden to prescribe drugs "off label." (Approved for one malady but prescribed for another). [I would point to Low Dose Naltrexone - a case in point, often prescribed by doctors] I would tend to be more understanding if they failed me on that front. I know there are sources to go to acquire the drugs.
I believe that when I go into a physicians office I am going to have a consultation with a professional, seeking their advice. When they fail to be current with developments in their field or display a lack of concern with my desire to explore all reasonable alternatives, then I feel they are being disrespectful of me as a person.
As far as "signing on" for a Clinical Test . . . for many tests, they are blind and there is a 50% chance you will receive a placebo. I don't like those odds, especially if the efficacy of the drug has been at least partially established. They have to be within travel distance (often not feasible) and travel costs aren't covered. Other than those points, it an option that is "better than doing nothing."
Michael J. Fox Foundation, Van Andel Research Institute And The Cure Parkinson's Trust Collaborate To Assess The Clinical Use And Development Of Nilotinib In Parkinson's Disease- Investigators will focus on safety for long-term use in non-cancer patients
-- Partners aim to design and co-fund a multi-site trial to begin in 2017; trial endpoints would include precise biological measures of drug activity as well as symptomatic response
-- Patients and clinicians urged to proceed with caution
NEW YORK and GRAND RAPIDS, Mich. and LONDON, July 12, 2016 /PRNewswire-USNewswire/ -- The Michael J. Fox Foundation for Parkinson's Research (MJFF), Van Andel Research Institute (VARI) and The Cure Parkinson's Trust (CPT) today announced plans to collaborate on the clinical development of nilotinib, a chronic myelogenous leukemia drug that has shown potential in preliminary studies as a treatment for Parkinson's disease. As part of these efforts, the organizations aim to design and co-fund a therapeutic development program including a double-blind, placebo-controlled clinical trial of nilotinib expected to begin in 2017.
"We are enthusiastic about further investigating early clinical results that indicated some level of nilotinib safety and tolerability in Parkinson's patients," said Todd Sherer, PhD, chief executive officer of MJFF, one of three authors of an editorial published today in the Journal of Parkinson's Disease (JPD). Co-authored by Sherer, Patrik Brundin, MD, PhD, director of VARI's Center for Neurodegenerative science and co-editor-in-chief of JPD, and Richard Wyse, MD, director of research and development at CPT, the editorial summarizes the current status of nilotinib for Parkinson's, acknowledging the promise of intriguing clinical and pre-clinical findings but urging caution on the part of patients and clinicians until more research is done.
Collaboration Aims to Verify and Expand on Previous Nilotinib Findings
The goal of the MJFF/VARI/CPT collaboration is to advance nilotinib as a potentially disease-modifying and/or symptomatic Parkinson's treatment by first and foremost expanding on early safety findings and potential side effects in order to better understand the implications of long-term use of nilotinib in non-cancer patients.
The program also will rigorously address early-stage preclinical and clinical findings about the drug. Earlier studies have demonstrated some preliminary data on measures of drug penetration into the brain (as measured in spinal fluid) and exploratory biochemical measures. The MJFF/VARI/CPT study aims to verify and expand on these findings.
Preclinical studies have shown that nilotinib may protect neuronal cells from Parkinson's pathology by inhibiting the activity of a protein known as c-Abl, but additional work is required to understand the relationship between nilotinib dosing and c-Abl activity. The role of c-Abl as a cancer driver in myelogous leukemia is well known and, as recent work by others in the field has demonstrated, it may also play a role in Parkinson's disease. The study also aims to explore and independently verify nilotinib's potential to treat Parkinson's symptoms.
Patients are encouraged to create a profile on Fox Trial Finder (foxtrialfinder.org) to be notified if they are a likely match for the planned nilotinib trial or other trials in need of research volunteers.
Patients and Clinicians Urged to Proceed with Caution
There is reason for optimism about the promise of nilotinib in Parkinson's disease, both as a therapy that might reduce symptoms in the short term and potentially even as a disease-modifying treatment (one capable of slowing or stopping Parkinson's progression, something no current treatment can do). Nonetheless, patients and clinicians are urged to wait for further safety data before considering adding the drug to their treatment regimens at this time. There is not yet enough information to assert that it works in Parkinson's and, perhaps most critically, that it is safe to take long-term.
"We are enthusiastic about this partnership, which demonstrates the commitment of those involved to leave no stone unturned in the quest to find better treatments for Parkinson's," said Tom Isaacs, co-founder of The Cure Parkinson's Trust. "It is imperative that we work urgently with the Parkinson's community — my fellow patients as well as drug developers — as we continue vetting nilotinib's potential to address the medical needs of people with Parkinson's in a safe and effective manner."
MJFF, CPT and VARI have long recognized the potential of repositioned drugs — that is, drugs approved to treat other diseases, which have also shown promise in Parkinson's — to significantly cut down on the time and cost of moving new Parkinson's treatments from the lab to clinical care. An investigation of the high-blood-pressure drug isradipine funded by MJFF from 2007–2015 has recently entered Phase III clinical testing. CPT and VARI have partnered since 2014 on their Linked Clinical Trials (LCT) initiative, which is dedicated to funding the development of repositioned medications with potential to slow or reverse Parkinson's disease. Through LCT, The Cure Parkinson's Trust and Van Andel Research Institute have committed to work with The Michael J. Fox Foundation to further explore the possibility of nilotinib as a Parkinson's treatment, and to educate Parkinson's patients and families about the drug.
About The Michael J. Fox Foundation for Parkinson's Research
As the world's largest nonprofit funder of Parkinson's research, The Michael J. Fox Foundation is dedicated to accelerating a cure for Parkinson's disease and improved therapies for those living with the condition today. The Foundation pursues its goals through an aggressively funded, highly targeted research program coupled with active global engagement of scientists, Parkinson's patients, industry leaders, government research funders and regulators, clinical trial participants, donors and volunteers. In addition to funding more than $600 million in research to date, the Foundation has fundamentally altered the trajectory of progress toward a cure. The Foundation increases the flow of participants into Parkinson's disease clinical trials with its online tools Fox Trial Finder and Fox Insight; sponsors a landmark, international study to find reliable and consistent biomarkers of Parkinson's progression; promotes Parkinson's awareness through high-profile events and outreach; advocates for state and federal policies that support medical research and increased access to health care; and coordinates the involvement of thousands of Team Fox members and grassroots volunteers around the world.
For more information, visit us on the Web, Facebook, Twitter, LinkedIn, Instagram and Pinterest.
About Van Andel Research Institute
Van Andel Institute (VAI) is an independent biomedical research and science education organization committed to improving the health and enhancing the lives of current and future generations. Established by Jay and Betty Van Andel in 1996 in Grand Rapids, Michigan, VAI has grown into a premier research and educational institution that supports the work of more than 360 scientists, educators and staff. Van Andel Research Institute (VARI), the research division of VAI, is dedicated to determining the epigenetic, genetic, molecular and cellular origins of cancer, Parkinson's and other diseases and translating those findings into effective therapies. The Institute's scientists work in on-site laboratories and participate in collaborative partnerships that span the globe.
About The Cure Parkinson's Trust
The Cure Parkinson's Trust was set up in 2005 by four people living with the condition. It has one bold aim – to cure Parkinson's. People living with Parkinson's shape the charity's policies and approach. Its innovative Linked Clinical Trials Programme focuses on drug repurposing, prioritizing potentially disease modifying treatments and moving them forward to clinical trial. Nilotinib has been explored through this programme since 2012. This programme has been developed in collaboration with the Van Andel Institute and to date six trials are underway on drugs used in other conditions, and two regenerative medicine trial, of which show the potential to slow, stop or reverse Parkinson's. cureparkinsons.org.uk
Michael J. Fox Foundation, Van Andel Research Institute And The Cure Parkinson's Trust Collaborate To Assess The Clinical Use And Development Of Nilotinib In Parkinson's Diseas
This study, to be started "sometime in 2017" , comes TWO YEARS after the first promising results showing the efficacy of Nilotinib for Parkinsons were summarized widely in the press. One wonders why MJFF has taken so long to get on the job here.
Thanks for that. Nilotinib is only one of a large number of drugs being tested or proposed for repurposing so it may not be the considered the most promising to go to trial. Also other factors may have been taken into account such as the potential scope for volunteers. Not everyone will be suitable candidate for each drug - I have heart failure for which I take eleven drugs besides my PD ones. The potential for an adverse reaction is quite large: I am aware of some negative interactions already.
I know it is frustrating to go through the waiting process but I'd rather do that than become a victim of my enthusiasm to find a cure. I don't believe there is a 'cure' as I see PD as a syndrome to which each of us reacts differently o the various presenting behaviours.
Oh by the bye, re the media, in UK we hear most weeks about some major breakthrough in various treatments for a range of conditions. I have yet to see a 'cure'.
Honeycombe Thankyou! I was about to do an Internet search as I was sure there would be more info and you have found it already. Cure Parkinsons Trust are doing a lot of work on repurposed drugs -( they are also the sponsors for this Parkinsons Movement Heath unlocked site.)
Re the media, Agree with you. I heard Tom Iaacs say about the supposed Breakthrough in five years we all hear about that it's the longest 5 years in history
I don't think the blame should be on the researchers scientists, they don't write the hype, often their institutions do to attract funding, - the cost of competition, or the newspapers do to sell their magazines
We, here in the U.S. hear about promising things all the time. It seems to me that researchers / scientists are awfully fast on the trigger to tout some new piece of research that's been done on mice (or ants) that has apparent benefit to antificially induced Parkinsons. Some of this stuff is awfully far away from practical application. And there is the type of drugs (Nilotinib as an example) that may be suitable for some PD folks but put a stress on patient's systems (such as one's heart) that make them inapplicable (your situation and this drug a case in point). Some of these repurposed drugs (that fight cancer) may be inappropriate for people with weak kidneys.
Thanks again honeycomb3. May there be many bees in your future.
As a care giver to my spouse I find it best for the PwP or care giver educate themselves and then discuss with Neuro. If Neuro not open to discussion it may be time for a change. No 2 cases are the same and therefore Neuro needs to be open to get help from PwP. I am fortunate that our Neuro is very open to my suggestions and values my input.
I am going to up set a lot of people but here goes.
We should stop reading about the latest miracle drug or treatment on the internet. They are put there to raise money for research or to raise money for studies. They are not meant for lay people like us.
We should embrace known meds and treatments. Like exercise and meds that have been used and people have had success with.
We should leave the research to the fine people who have been trained to do such work.
I have never had the urge to fly to some 3rd world country to let some unknown, untrained person give me voodoo water and tell me i am cured. it is not going to happen.
This is just my opinion and practice and i control my PD almost completely day after day.
I think it is irresponsible for "researchers and scientists" to announce the potential efficacy of drugs for human beings so early in testing. It seems that "if it works on a mouse with "simulated parkinsons" .... then they are out there suggesting they are on the brink of the silver bullet.
Looking at Nilotinib, however, this is a drug that has been shown, in human tests (a very small cohort) to not only appear to stop symptom progression for six months, but to roll back some symptoms.
What is completely outrageous is that after the conclusion of the initial test and reporting conclusions A YEAR AGO, ABSOLUTELY NO FURTHER TESTING HAS BEEN DONE. Indeed Michael J Fox is just now announcing that maybe they'll resume testing NEXT YEAR - 2017 ! (Like HELLO... how casual can they be on this thing !). They had the temerity to put on a seminar "about developments with Nilotinib which provided no further evidence or ideas about how it works and instead tutored their audience on "how clinical tests are run"... and solicited input from PwP's who are taking the drug independently.
Michael J Fox, the organization that is the "major funder of Parkinsons research" can't get off the dime and test the most promising drug around?! And you fault people, whose health is rapidly declining.... from taking matters into their own hands?! ITS THEIR BODIES... THEY GET TO DECIDE !
I'm inclined to agree with you regarding "VOO DOO" medicine in foreign countries. This embryonic cell business is utter non-sense. One has to be careful.
I am suggesting that it makes sense to consider taking some medications that appear "neuroprotective"... that have been shown in initial testing to be such... particularly those currently in Phase IIi Clinical Testing... These are NOT silver bullets, yes you still get to die, but that they may extend your life, some. Some of these drugs, like LDN, are very inexpensive, have been shown to be safe and SOME doctors will prescribe them. It seems to me completely reasonable to consider taking them.
I also agree with you that exercise, good nutrition are extremely important and those things should be "at the top of the list" of things that you do. Finally, I respect your decision to do nothing and to wait for the blessing of Clinical Testing of drugs before taking them.
"the conclusion of the initial test and reporting conclusions A YEAR AGO"
This is incorrect. The peer-reviewed scientific paper was only published last month. Before that, all they had to go on was effectively a press release. Here is the paper:
I think they have moved quickly to put together a collaboration of 3 different PD organizations. If I recall correctly, during the webinar they said that the specifications for the upcoming trial should be ready within a couple of months.
In case you have not yet seen it, the editorial which accompanied the publication of the scientific paper is also worth reading. Here is the editorial, which is titled "Nilotinib - Differentiating the Hope from the Hype":
So many of our meds ( just about all of them actually) have been thought to be neuro protective initially but non yet have proven to be.
Confused, bothered and bewildered
I suppose that Bailey is correct. If and when a real game changing medication or treatment is discovered , the news will be everywhere and almost unavoidable to know. So then why are we here? Is this just a mutual pity group or can we actually contribute to each others well being. Not sure anymore, but then that is almost a hallmark of PD. Uncertainty.
I was able to control my PD but never completely. Maybe we just cannot even now come to grips with the words " Chronic Disease ". We fight and we will continue but it is a long tough battle if we do not have any hope. Lately hope has been fading and I am sure that is why I come here, just to build hope when down.
I suppose that Baily is correct,but one wonders if 5 years from now he will still be able to say that. It is 1 am, I am just tired and cant sleep and it is difficult to type. Back to my scenario of pretend you are the neurologist. It must be damn difficult treating patients with a chronic disease with only a few bits of medication as the tools. I could not do it.
THANK YOU for sharing that incredibly beautiful visual.
Doctors are reluctant to steer you to any medication that has not passed the various trial stages -- an 8- to 10-year process. So far Nilotinib has passed ONLY the safety trial. In other words, it will not kill you. However, I'm stunned that there has been no buzz about it in your doctor's circle since it got a lot of press.
I like it. 53 responses to my post of two years ago.... not too shabby ! Update on Nilotinib I found a neurologist to prescribe the drug, purchased a months supply, read the small "black box" print, chickened out about taking it on my own because of the fact that I would need constant medical supervision, prescriptions (neurologist had lung cancer). Instead I opted to get into the Clinical Trial for the drug (Georgetown U) and am taking the "medication" (Placebo ??). Flying to DC once a month from Phoenix or Maine. My skin is, literally, in the action.
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Requested help for further training of neurologist
How Does One Find a Good Neurologist?
Neurologist says probably Parkinsons, no medication as yet, what to do now!!
Husband's neurologist is weaning him off levadopa carbadopa to put him completely on pramipexol. 
