Azilect - Neuro suggests I could start it if want, any thoughts?

Hi all, firstly great site - fully of hugely supportive people - well done! I'm a 52 year old diagnosed 2 years ago, no meds ( I'm in the j.pepper / Colin potter camp!) Progression slow but annoying. ...main symptoms are slowness and pretty rigid left shoulder. Both these I can live with, however my Neuro is pushing me towards one mg of azilect, suggesting it will change my life! I'm reluctant to start meds if I can manage without. anyone have experience of reluctantly starting azilect and how was it!? Ta

40 Replies

oldestnewest
  • I took Azilect from diagnosis and felt much better for it. Taking some medication makes excercising a lot easier.

  • Thanks, fortunately exercising is not difficult for me - finding the motivation is however!

  • The Azilect improved mood (motivation) which made it easier to excercise.

    I am now on a low dose of Sinemet CT, and following PDWarrior excercise programme.

  • I started 1 mg Azilect a few months after starting Carbidopa/Levodopa, a little over two years ago. I experience slowness, with intermittent stiffness on my left side and light sleeping problem. I am 56 now. Between the two it has helped reduce my rigidity, with Azilect probably helping even out the day somewhat. Only need to take it once a day. I haven't been on it alone, without CL, so I can't say what it's sole effect is. As other recent post notes, a recent retrospective analysis study finds MAO-B longterm use may well confer slight neuroprotective effect. I haven't been off it. But I understand it to be recommended that you temporarily discontinue use two weeks before receiving anaesthesia. So, it may be advisable to carry some medical alert with your ID. Exercise is probably is the best neuroprotective. Azilect hasn't helped with sleep, but I do still walk several times a week when I'm not working or resting.

  • Again, thanks for this and other's responses.

    rightly or wrongly, I trust people on here more than my Neuro!

  • A lot of people take azilect and are really happy with the results. Now for the other side of the coin. After taking it for about two and a half months I thought I was losing my mind. Could not remember anything plus my driving was Spacey. Finally I got some of listed side effects, it felt like I had the flu all the time. I stopped taking it, and had couple bad weeks. My mind returned to normal. I did notice my movement was worse. My neurologist said it's might slow down the progression there is no proof of that.

  • I was taking azilect for 3 years. My memory became terrible, but I didn't connect it with azilect. Now I think it might be connected. I stopped Azilect a week ago. I'll report the result.

  • Me too. Similar feelings

  • I am sorry about what I am going to say but it must be said. There is no reason on this planet to delay meds. If you had cancer you would not say can manage without meds i will just suffer and die. Delaying Parkinson's meds does nothing to help your pd or make your life better. It is not brave it just shows you are ignorant. Ignorant is not a insult it just means you lack knowledge. Why delay when the meds at the early stage you are at when meds can almost completely control your symptoms. Take the meds live life today. Using meds early does not make them work longer later. the meds work the same as long as you need them. They are not less effective later on your PD progresses to a point where no matter how much you take your body just can't use them.

    Again i am sorry about that but pwp need to learn more about pd meds. 11 years on meds and doing great without any major side effects most days with none.

  • Thanks, an open, helpful response- appreciate it and thanks to everyone who replied.

  • I would totally support this line of thinking/acting...managed to the least amount/frequency required...a good long term strategy.

  • Sorry Bailey, Please DON'T call ill people IGNORANT, assuming YOUR experience applies to ALL patients. MUCH MISINFORMATION, that you speak so assuredly about, it might be YOU who needs more education about PD meds. Is YOUR experience superior to all others? that is insulting. My spouse (now 80) did NOT "start living life" when he started taking this (damn drug) Sinemet!! His life has been sadly stolen, he was elected to his college's basketball Hall of Fame (Milwaukee), as a point guard. He became a Lutheran Pastor, with a Master's degree from the seminary. I think your experience has variables that don't hold true for all other Parkies. Perhaps it is YOUR IGNORANCE that is showing. I am speaking for my spouse, who would be unable to write this.

    !) many people DO develop tolerance the longer they take Carbo-levodopa, requiring increasing dosages over time. Because this is common, our Mayo clinic Dr (head of the Neuro Dept @ Mayo clinic) said its BEST to delay starting Sinemet for as long as you can tolerate. Starting Sinemet did NOT help my spouse to suddenly feel better! It's more like a necessary evil, to help him move better. My stepfather (now deceased) continually needed to increase the dosage throughout his life, and then came to the place where Sinemet was no longer effective.

    2) the side effects for MY spouse are worse when he take 2 tabs as opposed to taking 1 1/2, greatly reduced "druggy/groggy/spacey mind" when reduced to 1 1/2, after just one dose reduced. When he was hospitalized earlier this yr, both I & staff nurses could notice how markedly improved his mental status was when the dose was reduced and agreed to keep it that way. The same "drugged" behavior happens each time he tries to increase the dosage. (he takes them 5 hrs apart). not a placebo effect.

  • How could my success be an insult to others. I am having trouble holding back the tears as i write this. You seemed to be heart broken over the loss of what sounds like a remarkable man. I have not achieved such success in my live. I have just worked hard from the time i was 13 till i was forced to retire at age 62. if encouraging people to take control of their life and live it fully is an insult then so be it.

    My success has come with a price. It took me 9 years to get it right. During those 9 years I have taken all types meds and had extreme side effects that have lead to trips to the er cost me the trust of my wife loss of my job forced retirement over 100,000 dollars to gambling. All because i was ignorant of the side effects of my meds.

    But by not giving up and blaming the meds i live my life to the fullest.

    Please reread my reply it is was written to inform and inspire.

    I feel your loss and i will pray for you.

  • Bailey_Texas

    I must join in here.

    I find your tone quite arrogant Bailey!

    I am happy for you Bailey, but not everybody's body is like yours.

    If they were we would all be doing what you are doing.

    It would be called "The Bailey cure."

    I took 10/100 Sinemet 4 times a day, and after two years an intolerable dizziness set in. I had all kinds of tests taken to no avail.I could not even begin to exercise as much as you and Mr. Pepper do. I would love to, but with the fear of falling, I don't dare.

    Then my new neurologist asked me to cut back to 3 doses on Sinemet instead of 4.

    The very next day my dizziness was gone!!!

    There is more to the story. I need more meds, but it won't be

    Sinemet.

    I think I will ask for what Mr. Pepper is using MAO_b and see how that works.

    Please don't call people ignorant. You don't know what they are dealing with.

  • I agree with Bailey.

    When i started taking madopar my life became so much better.

    Had been reluctant to start medication but didnt have a good reason why.

    As Bailey points out, lack of knowledge on my part.

    What happens in the future for me is a decision for the future. At present the medication and dosage is giving me a better quality of life.

    All the best in your decision making.

  • I totally agree, take the medication and live life to the full , you never know what's round the corner !!!😄😄

  • What your neuro didn't tell you-

    askapatient.com/adverse-eve...

  • Hi I was diagnosed last year aged 55.I had stiffness and pain,rigidity, slowness and right arm tremor. I was put on half tablet of sinemet twice daily.Its made a big difference! My arm now swings when I walk and tremor has stopped.

  • I was never diagnosed ...the neuro calls my tremor , a mixed tremor ...I take no meds...anyone have a suggestion for tremor?

  • Rosa, are you sure you don't have Essential Tremor? I hear klonopin works pretty well for that, though can be addictive.

  • I'm 56, diagnosed 2 years ago, and put on azilect right away. No noticable side effects - very well tolerated. Based on my UPDRS scores, my disease has not meaningfully progressed since my original diagnosis. I also exercised regularly over that period. Tough to definitively conclude that it was the Azilect keeping me stable, but those are the facts.

  • Hi Seamus. Well done! Do you know how Azilect and Eldepryl work? I am not a doctor or scientist, but from memory, MAO-b inhibitors stop the natural breakdown of dopamine, which enables the patient to get the use of more natural dopamine, as against taking levodopa, which the brain has to turn into dopamine.

    Levodopa has more side effects than MAO-b inhibitors, the worst of which, in my personal opinion, is dyskinesia (Which presents as serious uncontrollable movements). Patients have to endure this dyskinesia in order to be able to move at all. I have not experienced this side effect because I was not on sinemet long enough. I was only on sinemet & symmetrel for two years, because I was taken off them by my neurologist, and then put onto Eldepryl because the manufacturers claimed that it may be able to slow down the progression of Pd.

    At that time, I also stopped going to the gym for 90 minutes a day, six days a week, and then started doing Fast Walking, for one hour, three times a week. I had been doing six times 20 minutes a week of walking or running on a treadmill in the gym. That means I did 2 hours a week on the treadmill as against 3 hours walking on the road.

    I am under the impression that when we walk fast, which is not natural, our brains produce a natural protein called GDNF (Glial Derived Neurotrophic Factor). Glial cells are the little jobbies that produce dopamine, and these are the very cells that get damaged by Pd. Neurotrophic means, Repair or Rebuild nerve cells. So when we walk fast, I have every reason to believe that we produce this natural repair kit and we land up with more dopamine producing cells than we had before. If my brain is producing enough GDNF every week to repair more Glial cells than the Pd is damaging, then I will be getting better, which I have been since 2002.

    On top of that, the only serious side effects of MAO-b inhibitors is elevated blood pressure levels. My blood level went up to 260/190, an unbelievable level. I had not been told by my neurologist that my blood pressure should have been checked regularly, with the result that it got to that level before my heart specialist took it and nearly had a heart attack himself. I came off the Eldepryl for six months and the blood pressure came back to normal. I was also not aware that I should have avoided eating food that contains a lot of Tyramine. You can look up food containing Tyramine on Google. The worst culprit for Tyramine is warmed-up-food. I used to eat at least one meal a day that was warmed up. Mature cheese and any food that stands around a long time before it is eaten should also be avoided.

    So what would you think would be the best way to treat Pd? My money is on MAO-b inhibitors and 3 hours a week of fast walking. I have not taken ANY PD MEDICATION for the past 14 years and I have not needed to see my Neurologist for the same 14 years. I AM NOT CURED! But I have now lived a normal life for the past 14 years.

    I am constantly reminded that we are NOT ALL THE SAME! But I would think that everybody should try adopting this way of dealing with Pd, before listening to anybody else who says that I don't have Pd, or my Pd is different to yours.

    There are many Pd patients who just cannot work up the determination to start doing fast walking. I have been able to show hundreds of people already, all over the world, "How to walk normally again, within two minutes of being shown how". When they know how to walk properly, it only takes six months to get up to speed to start producing enough GDNF!

    Large sums of money have been spent on finding ways of putting artificial GDNF into the brain, as has been passed on to us over many years now. They cannot get it right! But, "Why have they not spent a fraction of that money on finding the best way to get the brain to produce more natural GDNF?" My guess is that fast walking does not put money into anybody's pockets. I might be wrong!

  • Thanks John for a great, really useful response. I appreciate your time. Keep up the good work!

  • "Glial cells are the little jobbies that produce dopamine" - is not correct.

    Neuroscience currently identifies four main functions of glial cells:

    To surround neurons and hold them in place

    To supply nutrients and oxygen to neurons

    To insulate one neuron from another

    To destroy pathogens and remove dead neurons.

    en.wikipedia.org/wiki/Neuro...

    I agree with you: intensive (heart rate > 120 bpm) exercising is the most effective treatment.

  • Hi Pachikov. Thanks for this. I don't pretend to understand everything I read about the ways the brain works, but from reading the above article it can be safely assumed that if the glial cells are not doing their job properly then the neurons that produce dopamine will not do their job properly either! So, for simpletons like me, it is easier to understand that the GDNF causes the brain to produce more dopamine.

  • Thank you so much, John, for being on this site and sharing your experience. I've been having tremors for the past several months but officially was diagnosed today - still a shock even though I've suspected it all along and got some books on the subject. One of them is "The Brain that Changes Itself" by Norman Doidge, MD where in chapter 2 he describes your case so well, couldn't put it down - you are such an inspiration and I am so grateful to be able to learn from your experience. I have 28 year old son with a disability (Down Syndrome) and want to be around in good health as long as I can.

  • My husband diagnosed in his early 50's did not want to start medication fearing he would run through all of them and then they would not work when he really needed it. He had stiffness, slight tremor in right leg and hand and the masked facial expression. Things he said he could live with. Neurologist said azilect doesn't work anyway and didn't push. we went to a movement disorder specialist and she started azilect right away citing quality of life Hugh changes!!! He had symptoms he wasn't even aware of until they were better! Balance issues, speech volumn. So thankful he started it. Hope you find the same

  • Thanks, I hope your husband is still doing well.

  • Yes thank you. That was over 5 years ago. He has since also started amantadine when he developed a mouth tremor and it is gone completely as well as he now has his voice back :)

  • just interested in your post about amantadine, I haven't heard it mentioned before. My husband's been on rasagiline for a while, but has, like yours, developed a mouth tremor, he was diagnosed 2013... we're not keen on taking meds, but sounds like amantadine is quite gentle. Does your husband still take rasagiline as well? would be grateful for any advice... we're not sure where to go next as his consultant suggested Pramiprexole as a next step, but that's an agonist and we're bit concerned about possible side effects.

  • Yes he is still taking the Azilect. I think amantadine was originally used for the flu as antiviral. We also were concerned about side effects of agonist medications so his doctor thought a bit and then prescribed amantadine. It has completely stopped the mouth tremor. His mother also has Parkinson's and was not responding well to meds. We requested a trial of amantadine with her sinemet and she is again able to get up out of bed and move around better.

  • thank you, it sounds like it could be our next step

  • I am now 70 and started on Azilect five months after after diagnosis two years ago. A physician that I saw for a knee problem noticed my tremor and thought that I should be screened for PD. He recommended a neuro/mds who could not schedule me right away, hence the delay in treatment. No side effects whatsoever, blood pressure normal.

    Progression since then has been minor. I started with left hand tremor and now I notice more slowness and toe curling. These symptoms are tolerable. I find that walking uncurls the toes after a bit and that the tremor comes and goes. I exercise daily, mixing it up with yoga, qigong, Pilates, aerobics, weights, and walking outdoors or on the elliptical or treadmill. I exercise with people who don't have PD although since we are all older there are plenty of physical issues among us.

    My neuro has suggested the neupro patch, but I am reluctant to start. Azilect just went generic and I don't want to start with another costly medication Also neupro is a dopamine agonist, and many people have done some crazy stuff while on this category of meds. I have had issues around overeating in my past, and now that I am maintaining a healthy weight, I do not want to resume old habits or make my life unmanageable with overspending or other problematic behavior.

  • When aged ,78. diagnosis of PD Dec 2015

    Mild symptoms . Slowness . Speech slower . Lethargic

    but managed OK

    Persuaded to start Azilect. Nov ,2016

    Side effects similar to the symptoms....

    Feel drowsy 2 hours after taking tablet

    Not convinced.

    But told to persevere..Otherwise symptoms will increase

    Any other problems now all attributed to PD

    Id be interested to hear from anyone not taking other medications ..

    Who has come off Azilect ?

    What result?

  • I was "persuaded" also to take Azilect (Rasagiline) along with the Sinemet I originally was prescribed. I have an enlarged aorta and that Azilect medication caused elevated b/p so that was worrisome. And I must say that while taking Azilect I felt nothing, no benefit, just an elevation of my blood pressure. Therefore, in response I took the logical initiative to reduce my doses of Azilect to half tabs. When the neuro was informed by me of my lowered medication he offered to refer me to another neuro, he is such a priggish bastard. There were other issues we had with each other but to get to it, I removed myself from his care and quit taking Azilect with no withdrawal problems as I had already tapered off and continued to do so. I have also more recently withdrawn from Sinemet by replacing my dopamine through natural sourced L DOPA that I order from Swanson's vitamins of all places. It comes in the mail delivered on time, no prescription and I calculate I am spending about 2 dollars a day, less than a pack of smokes-I don't smoke. I feel better than I have in years, no elevated b/p, manageable tremor and doses last longer-about 4 hours. Yay! I hope I responded giving you what you are looking for.

  • Everyone responds to medication differently. I fought taking meds and tried various supplements and coconut oil. I should note that I exercise fanatically at least 5 times a week and this includes fast walking. My slowness and stiffness still progressed. I finally started taking Azilect about a year and a half ago. It helped my stiffness and mood considerably within a month or so. My neurologist said this med can take a few months to work. I had no side effects whatsoever and I am usually sensitive to medications.

  • 63-year-old male diagnosed in June 2016. Recently (5 days) stopped 1 mg Azilect as it seems the symptoms of the drug for me were the same as those of PD. Felt Spacey slow stiff with brain fog, anxiety. Off meds completely 5 days. Have felt ok as long as iexercise strenuously twice a day. Pilates, spinning, lifting. Still trouble sleeping. I've been in the denial camp and was hoping symptoms would stop when I quit Azilect. Trouble is I'm being forced to turn my life over there in an unscheduled move. Working with realtors to figure out where I'll be living in two months . Causing a great deal of anxiety and I'm really not sure I'm going to be able to deal with as the move looms closer. I'm all alone with no family or friends and don't have a clue where to go. Scared. Symptoms are aggravating as is lack of sleep. Can anybody offer any advice? Really wish I could just speak to another human being her go through this massive move with some partner

  • I was told when I was first diagnosed three years ago to take Azilect to slow progression. My progression to date has not been notable. A recent study supports the fact that progression in those on Azilect appears to be less. I take C/L too to control my symptoms. I take Azilect to slow progression. Take it!

    PS I am 73 and still working

  • Hi, I was diagnosed 18 months ago aged 54 but had symptoms for 1 year before that.

    I was put on Rasagiline straightaway: standard 1mg pd dose.

    I have an annoying left hand/leg tremor (which is worse now than it was a year ago) and a gait issue - my left foot doesn't lift and fall quite as it should (this was my very first symptom and hasn't really changed much).

    I'm not sure the Rasagiline makes any difference - certainly I don't notice any change if I don't take it for a couple of days, but that's probably not long enough to tell. When I first started taking it it didn't seem to have any effect though, so who knows?

    The reason I keep taking it is I'm not noticing any side effects either and my neuro says there is some evidence that it might help slow the progression.

    As for the heavier drugs - I hear what Bailey says and my neuro would definitely say the same. The disease continues to progress regardless: the drugs just deal with the symptoms.

    The symptoms get worse as progression occurs - hence you need to up the drugs which then cause side effects - which often necessitate more drugs...and so on.

    I don't believe the drugs cause the symptoms to get worse (because the body becomes tolerant or the drugs lose efficacy) - I think it's just the disease progressing.

    But despite Baileys advice (which I think is fundamentally correct) I intend to defer the Levodopa etc for as long as is reasonably possible. I'm happy to go down that route when I have no choice i.e. when living normally starts to become really difficult.

    Exercise and avoiding stress seem to be part of the key at this stage - although I'm still working and can't do three hours a day in the gym or some of the more intense regimes some here advocate!

    Good luck,

    Marc

  • Cheers!

You may also like...