I have read a lot of conflicting information about Azilect. Some say it slows progress. Some say it does not. I am not yet on medication. I am in the earliest stage of PD; no arm swing, balance issues, heavy “dead” leg, RSL, internal tremor, intermittent external tremor, brain fog, etc etc
I do not want to take meds prematurely but if it is a med that slows progress than of course I want it.
Any links or personal experience would be so appreciated.
(This forum has boosted my moral and I am so grateful to you all. This can be a lonely road and you really help.)
I've taken Azilect for many years. Azilect was one of the first drugs I started taking. My neurologist said at that time it slowed progression. My neurologist now said they don't believe it does. I'm staying on it because I don't want to take a chance. I'm attaching a couple of paragraphs, notice the dates on each one.
Azilect, a drug approved for Parkinson's treatment, slows the breakdown of dopamine and other brain chemicals. There's reason to think that Azilect may do more than treat Parkinson's symptoms. It may actually slow the relentless progression of Parkinson's disease.Sep 23, 2009
WASHINGTON -- Azilect (rasagiline), which is already approved to treat symptoms of Parkinson's disease, does not appear effective at slowing progression of the neurodegenerative disease, according to an FDA review.Oct 14, 2011
Thank you Laglag. When you say you don’t want to take a chance do you mean chance in changing meds or chance of it maybe slowing progression? Multiple people I have happened upon believe it has slowed their progression yet the studies say no. So perplexing.
My neurologist told me if he had Parkinson’s, he’d use it. So I went on it , but am not sure if it helps. I was diagnosed in 2012 and we had that conversation in 2013.If I knew then what I know now, I would not rush into taking meds. I would go for the nutraceuticals first!
Have you heard about high-dose thiamine? (I’m guessing you know about Constantini’s work?)
Keeps up your research. This is a great place to start! Find the ones doing well —the outliers — like Howard Shifke’s story , and keep an open mind AND If I were you I’d try vigorous exercise and any other reasonable therapies!
I appreciate your caring response Oceanwind. I know this is hard at every stage but coming to terms with accepting this as my reality is really hitting me hard. Thank you for your response.
PD is still a challenge, but the medical model of progression is not necessarily the only reality - I am better than before I started Qigong 4 years ago.
Thank you Park Bear. That helps me so much. That gives me a sense of much needed peace. I keep looking for answers outside of myself which I must do but I also need to calm myself enough to look inward.
My husband has been taking Rasigiline for just over a year. He started taking Madopar over 4 years ago. Neuro added in Rasigiline to help stop dopamine being broken down in his system he told him. It enabled him to cut down on Madopar doses.
I wonder if he had taken this when first diagnosed it would have been a better choice of drug.
Difficult to know as you just take Neuro s advice initially when first diagnosed.
My husband has been taking Selegiline, which is the earlier version of Azilect, for 26 years. One a day. He will not go without it. He has never suffered with depression and we think this could be the reason. He feels better when he takes it and no noticeable side affects.
Thank you for the link. It was a very good article. Based on it I have concluded that Azilect, is mildly protective. Mao-B inhibitors are something I need to research more.
I take Rasagaline. It does sound like there’s a lot of confusion about whether these type of drugs are protective or slow it down. Like someone said, I think the latest news is no. But I have to say this particular drug doesn’t seem to have side effects that I know of, and since I was already on it when the “no research” came out, I decided to just stay on it. Every drug has side effects but it’s nothing uncomfortable that I’m aware of. Don’t know if that helps or not.🙃
I recommend reading the link rescuema included. Skip the first couple rambling paragraphs. I found this summary easier to digest than reading the studies themselves. I believe there is adequate evidence to conclude that Azilect has minor neuro protection.
Yes I am the same. Since it is definitely not hurting me and seems to help I keep taking it. It seems to slow progression. Maybe it is just placebo effect, but the placebo effect is powerful.
I’ve taken it since diagnosis. Neuro said it might slow progression so I figured it’s worth a try. No side effects but no way to measure if it works.I guess my progression is relatively slow though decline is speeding up now (5 years into it).
🙂 Yes, it would be great if there could be a new drug for a cure....but I wouldn't count on it anytime soon given the past track records of diseases more straightforward such as cancer. There is some good progress being made with recent advances in the field of genetics and genomics, so we shall hope for enlightenment soon.
In the meanwhile, your best bet is to drastically change what you've been doing for the last decade or so, starting with your diet, exercise/sweating, not being sedentary, finding any nutritional gap, or exposure to toxins, stress, etc. Many studies are indicating that alpha-synuclein is a result of something that has gone haywires aggravating the issue further down the chain of events due to myriad differing causes, so in order to "halt progression," you'll need to target the source of your particular causation.
I agree with all you just said. If you have books or videos or doctors, articles, anything! that you recommend that elaborates on this, I will read it all. I have made a ton of lifestyle changes and it has made a difference.
Try not to bury yourself with research - you'll feel overwhelmed with endless tasks, todos, and may contribute to being sedentary. Sticking around on this forum for a person with intellectual curiosity such as yourself will bode well toward solving your own puzzle while learning through others - I could tell you're a fighter. However, target the simplest first - eat organic/clean fibrous foods to improve digestion/constipation (various sprouted grains helped in my case), build stamina and muscles (huge for insulin sensitivity), do things to improve restorative sleep, practice meditation, get some sun, try helpful supplements - you already know the big ones. But above all, try to concentrate on enjoying and living fully daily.
I think that was her response to my asking if she has specific resources she would recommend. Well intentioned I’m absolutely sure. So many people, the majority of people, lead such unhealthy lifestyles it is assumed we personally do which is easy to take offense to as I personally have.
I do understand your feelings and I relate.
Please if I may, think of the intentions behind the message.
I really do think that in our lifetime they will find some disease slowing therapies of some sort to keep us taped together.
And some degree of rehabilitation like stem cells in our life time.
Man this sucks but let’s stick together, make connections, build friendships, and make the best of this.
(If you found this annoying, I’m originally from CA so I can’t help it. 😉)
Only you could possibly figure that out through your history. It's not necessarily what you caused (unless your abused drugs and alcohol), but also what you've been exposed to without knowing. Everyone's cause/symptom is different for PD which is why it's also called a snowflake disease, and there are many PD subgroups.
Have you switched over to organic foods exclusively (avoid glyphosate)? Been exposed to industrial chemicals, pollution, or pesticides/herbicides? Are you drinking and cooking with clean filtered water? Are you avoiding sugar, processed foods, and empty calories? Have you been exposed to antibiotics, especially the class of fluoroquinolones? Exposed to molds, heavy metals, toxic fumes? You exercised but have you been sedentary the rest of the time indoors? Any signs of digestive upsets, constipation, stress, lack of sleep, etc? The list is endless.
If you haven't yet, watch the video below and see if you could make some modifications. What is your definition of a balanced diet?
It might be helpful to think ‘my diet has failed me.’ And if indeed *food is your medicine*, then the medicine you have been taking was not strong enough to ward off this ailment.
This mind frame allows one to re-examine one’s dietary intake, even if you think it ‘normal’ or even if you think it is great. Or even if you think it in no way could contribute to your ailment.
*Vegetables, vegetables, vegetables. Did we mention vegetables?* (You do know of course of the Gut-Brain axis theory of PD)
And by the way rescuema is our (unofficial) resident dietary expert: you would be wise to give some consideration to her comments 🌹
Yes, and I absolutely believe in it. Zinc dyshomeostasis is a big problem for the vulnerable population and it is crucial to have a proper Zn/Cu balance for critical enzymes and mitochondrial/immune functions
Look into zinc ionophores and why zinc supplementation upon infection will not get zinc into cells to get you in gear - yes pure science. Also, read more on the importance of Zn/Cu below as it pertains to neurological diseases. Dyshomeostsis and deficient enzymes functions are not always easy to correct, and often takes many months. healthunlocked.com/parkinso...
There's no need to go vegan imho but the portions do matter to avoid inflammation and TMAO metabolites for pathogenic gut microbiome shift. If you've been indulging alcohol, definitely look into HD B1 or benfotiamine/TTFD. Wish you good luck.
I had not heard of TMAO metabolites. I am now reading about TMAO. It’s generated from choline and carnitine. I’m confused, I thought we wanted carnitine and choline but not if it results in TMAO metabolites. I was a vegetarian who ate dairy. Now I cut dairy but introduced chicken and fish. It looks like no meat at all might be optimum. Am I understanding this correctly?
I have read Dr. Mischley s book and watched some of her videos.
I will watch her educational series but from what I have learned from her so far, in an effort to make it feasible (not overwhelming) she does not go as far with her recommendations as might be truly optimum.
Dr. Mischley's recommendations are based on what was observed in PD patient population for best long-term results - she does not claim to know the underlying reasons why.
I personally do not believe going vegan is the answer but you do need to avoid TMA converting bacterium that tends to feed heavily on choline/lecithin/carnitine sources. My personal advice would be to consume some meat but keep the portions small, as in less than half your palm size. Micheley advises her patients to use citicoline, which is less likely to metabolize into TMA (compared to choline) while it helps to increase phosphatidylcholine, acetylchoine, betaine crucial for brain functions and methylation. As in most supplements, you do need to cycle on/off periodically.
Thank you so so much. I will reduce my meat portion size and frequency. I am in Citicoline based on Dr. Dale Bredesens recommendation.
I need to figure out / research my starches. I wrongly thought I should cut out all grains for a while in an effort to heal my gut. I have now learned that was wrong and I need to reincorporate some gluten free sources of starch.
I am determined to learn but it is overwhelming and complex.
"I wrongly thought I should cut out all grains for a while in an effort to heal my gut."
I know what you mean and I can easily see why with the Paleo/Keto/GrainBrain trends. Going vegan is also tricky while you must be cognizant of potential purine/oxalate overloads, and you tend to run out of ideas of what to eat safely.
What I would suggest for you to try is soaking/sprouting various organic grains and beans (lower oxalate varieties) to use as staple starch, alternating as much as possible. I use organic brown basmati rice (Lundberg, less arsenic), and add some hulless barley (high in beta-glucans - enhances butyrate production), quinoa, rye, black-eyed peas (for molybdenum), mung beans, garbanzo beans, kidney beans (extra caution/boiling required), lima beans, etc.
Soaking/sprouting will rid of various antinutrients and phytic acid while increasing nutritional profile and fibers. Get some wide mouth mason jars and sprouting lids from Amazon and the process is very simple once you get used to it.
You know an immense amount. It’s amazing. More than when I talked to a nutritionist. I just learned of oxalate this week. I need to read to retain / understand it. I will acquire the grains you recommended. I’ve sprouted broccoli before but never beans. I did not even know one could. I’m clueless on this. It will be my homework this week.
I fully appreciate that your sharing all this comes from a place of generosity and I am very grateful.
You're welcome. Since you're in the US - I've been buying most of my organic grains through Vitacost, and use many Shiloh Farms brand - all of them spouted without trouble and they come in smaller packages for you to try before moving on.
Rice and grains - soak for 3-6 hours. Beans - soak for 1 day, they'll sprout in another day. Drain and keep the jars upside-down on a trey, rinsing 1-2/day. When sprouted Basmati rice (after two days) cooks, it smells wonderful as in popcorn, and it's probably one of the safest starch to use regularly. Barley sprouts like weeds - I cook with rice 1:1 portion or less since they're chewy. You can also cook your broccoli sprouts with rice, of course, and add fresh daikon sprouts for myrosinase for sulforaphane. If you're cooking 2 cups of rice, keep black-eyed peas to 1/2 cup or less, just 1-2 times a week to avoid molybdenum overload and copper dumping. Be creative, and I hope you enjoy and benefit from it.
For more in-depth oxalate support, join the 'Trying Low Oxalates" Facebook group.
You can sprout some nuts such as raw almonds to reduce antinutrients and oxalates. I do eat some nuts occasionally but not regularly ever since I experienced a kidney blockage along with hematuria years ago that left many Drs clueless after Ultrasounds, CT scans, cystoscopy, etc. I eventually had to figure out what was wrong on my own and knew spinach containing smoothies along with a high oxalate diet contributed to it. I also learned cauliflower tends to cause issues and that was a huge bummer.
Yes, high oxalate can lead to intestinal permeability and gut dysbiosis, also shifting towards oxalate metabolizing bacterial species, and also turn candida albican to a more opportunistic pathogenic multi-nucleated hyphal form as to a harmless yeast form.
You having been a past vegetarian should take a closer look of the above, and I also advise you to supplement Jarrow's Zinc Balance (on top of your multies, below 35mg total/day) while reducing your meat intake. Also look into Olive Leaf extract and ubiquinol.
I’m presently at a health food store on a quest for the beans, grains, and supplements. The list of what I can eat keeps shrinking with the exception of adding back in the grains and beans. I suppose lectins are a legitimate concern as well?
Whole Foods would be a good place to look, but be sure to get certified organic grains and beans (tend to be tainted with glyphosate). Where they're grown also makes a big difference for soil compositions. Do check out Vitacost - it makes it easier and they almost always offer coupons.
This article may be of your interest. Yes there are many naturally occurring toxins, but some are beneficial in minor quantities, so as trite as it sounds, everything in moderation including moderation applies.
Thanks, but writing a health handbook is not one of my goals as I already spend way too much time obsessing on PubMed articles. ; )
When a disease modifying drug is finally found I hope you will join me in celebrating from across the pond with drinking and eating all the good stuff we have avoided! I intend on celebrating with wine, chocolate, and a baguette!
I still enjoy organic wine very occasionally (less than 1 glass). As long as you exercise and burn the excess glucose, you can afford to enjoy occasional chocolates. ; )
Even Dr. Mischely is in support of wine saying it's beneficial, but I wouldn't go as far knowing that alcohol drastically drains B1 out of the brain.
You can pick apart the advice given as much as you wish. My suggestion remains that you would be well advised to give some consideration to her comments 🌹
Hi, husband was on Azilect early on in his disease. It made him really happy and up, however, he started acting compulsive, for him, it was gaming. He also wrote a 300 page text book in a week. I have heard reports that this drug can enhance whatever compulsive tendency you happened to have, shopping, etc. I guess it makes sense if it does something to boost dopamine in some way. It was also the most expensive drug he took. Not a doctor, only my experience. Great, but use with caution and I would want objective family members on guard for any unusual behavior. Take care
"After Azilect was approved, some people reported developing new or compulsive behaviors while taking the drug. These worsened impulses weren’t seen in clinical trials of Azilect. Some people may feel that they can’t stop themselves from engaging in certain behaviors while taking medications for Parkinson’s disease, including Azilect. Examples of these behaviors can include:
gambling
binge eating
spending money in an uncontrolled way
intense sexual urges
For some people, these urges are intense. If you notice compulsive behavior while taking Azilect, talk with your doctor. They may lower your dosage or have you stop taking the drug."
Hi, pretty sure. He's been on many drugs. Which drug are you thinking of? Neupro patch? I remember his neurologist calling it a happy drug. He was really motivated and happy on Azilect. He's been through so much. Many drugs caused more harm than good. After 10 years we moved to the less is more approach. No idea if Azilect slows progression. Again, not a doctor and each PD case is pretty unique. Trial and error is one method, but a challenging approach if you are young and trying to manage employment. My husband is doing better now than he was in the first five years of his diagnosis, he struggled because of all the different meds he was on and all the complications they created. Blessed that his job was flexible and he was able to work from home through most of his struggles.
My husband took Azilect for about 11 years. At first it seemed to help a bit with symptoms. Now, his PD is definitely worse, so it didn’t stop the progression, but I suppose it’s possible that it slowed it...we’ll probably never know.
He stopped it last year when the cognitive impairment and hallucinations got pretty bad, and it’s recommended that you gradually stop all meds to determine if one is a cause. I don’t think Azilect was a direct cause...we didn’t notice much change on stopping it.
CC, I was on Azilect for about 8 1/2 years. Not sure what benefit it was other then making me very tired. Dr took me off of it last April. I expected some kind of a withdrawal effect. But nothing. That’s just my experience. ❤️ Karen
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