Cole, I took Azilect for 2 months with almost no side effects. I tolerated it better than Sinemet but had to discontinue it. It conflicted with another medication I take. Keep me posted. Good luck!

I have been on azilect for maybe 8 months or so and it has changed my life. I was really bad at one point were nothing was working. It has normalized my life and I am now working and functioning well. My quality of life is far better than before. I too wish I was on no meds but without them I'm afraid I won't be able to function.

Thanks all!

hope4acure, out of curiosity, how long were you taking Azilect before you noticed improvement?

If I remember correctly it was pretty significant after a couple of weeks. I am not happy to be taking another med but it works. I've heard that this med can bed short lived as far as effectiveness but I am functioning fully at work and home right now. It is taken once a day only. I call it my miracle pill. I don't know how others feel about this drug but for now I am at ease and my symptoms are at bay. One day at a time!! I just read my last post and it kinda says the same. I guess this is truly how it makes me feel!!

I have been on it for 5 years (1 mg a day) based on my first neuro's belief that it can slow progression . It was the first medication I was put on when 1st diagnosed with PD about 6 years ago at age of 49.

I have had no noticeable side effects from it . Luckily I have insurance so I only pay about $30/month (compared to $7/month for sinemet and stalevo)

On the other hand, I cannot say that it relieved any of my symptoms. To be fair, none of the dopamine agonists helped much either and all of the gave me negative side effects: lethargy , irritablity, and depression.

Does it slow down the progression ? I don't know. At first, I thought so as I managed to stay away from the "big guns" (sinemet / DBs), had no sign of tremor with my worst symptoms being no left arm swing, lose of flexibility of fingers on left hand and crappy night sleep (pardon my French). My neuro's marveled at how well I was doing compared to all their other patients and congratulated themselves on their wise advise. { Now I believe that most had little experience with Early Onset PD}

About 5 years in ( as predicted by PD Treatment Book, Ahlskog, Mayo Clinic), the wheels start to fall off the cart; I started to get crippling dystonia attacks and was now dragging my left leg around ( and closing my left hand in doors). I started taking Carbidopa/Levodopa therapy, which did miraculously cleared up all my symptons .... for about 4 months. Then ( again as predicted by PD Treatment Book, Ahlskog), the increasing loss of brain circuits lead to short on-off cycles, leading to shorter dosing periods.

At 6 years out (under ?), I'm down to 2.5 hr cycles which gives me 10 minutes windows to eat small amounts of protein ( 6 times a day. Unscheduled events (like eating an actual meal, traffic, sleeping, going to the bathroom, etc) throw me off. My doctors throw up their hands and say get DBS. Which leads my to conclude that (1) I definitely need to find a neuro who doesn't seem to know less about PD than me ( anyone live near the Mayo Clinic ?) (2) if you can get Azilect at reduced price try it, but don't lose sleep (or sell a kidney) if you can't/don't .

Sorry. Probably didn't help much but the rant made me feel a little better after spending another $100 on a neuro consult that seemed to be based on some hypothetical person they read about in some book - "now can I please go back to treating tennis elbow or {my favorite, I kid you not) "hot flashes".

Hope that it makes laugh - that's the best I got .

Cole,I tried Azalict and could not tolerate it. This is one drug that the fda said they can not prove that it has neural protective properties, slowing down the progression, but they said it does no harm. I call it Azalect and a prayer. good luck with it and let me know how it works. I was on Mirapex for a couple of years. It worked great to control the tremor but it made me compulsive.

The following article gave some interesting anylasis of the Azilect studies that had indicated some neuro-protective effects from taking the med, slowing progression. It lists out the complications of what they were doing and why the studies are questionable on their findings.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2865777/

Interesting reading, but a bit long. Apparently the FDA didn't approve it as a disease modifying drug, Not because it definitely isn't, but because they found the evidence "promising but not compelling." They didn't want to say it did modify the disease unless they knew for sure it actually does, and that more information was needed to determine if Azilect is disease modifying before they will tell the public it is.

https://www.michaeljfox.org/foundation/news-detail.php?panel:-tevas-azilect-data-close,-but-no-cigar-for-parkinsons-delay-claim

So there is evidence it is disease modifying, but the complications involved in the study and the subjective nature of it were enough to put the conclusions in doubt. It still may be disease modifying, but that conclusion isn't yet definitive.

At any rate, unless I'm turned down for some reason by Teva to get this for free, I'll at least get a chance to see whether it will help me or not. Won't know until I try it. If it ends up being disease modifying too, that would be an additional bonus.

The article link from MJF on the FDA decision broke due to a colon in it. See if this one will work:

https://www.michaeljfox.org/foundation/news-detail.php?panel%58-tevas-azilect-data-close,-but-no-cigar-for-parkinsons-delay-claim

Nope. Try this one.

https://www.michaeljfox.org/foundation/news-detail.php?panel%3A-tevas-azilect-data-close,-but-no-cigar-for-parkinsons-delay-claim

Those links take you to the blog, but not the article I was trying to post directly to. DS link bug.

But if you click on it and type "Teva" in the search window in the upper right corner, it will be the first article showing in the search results.

Today I received a phone call saying I'd been approved. Looks like I'm getting Azilect to see if it will help or not.

Good evening, all.

Just finished reading this string and thought I would put in my 2 cents. I have been on Azilect since December of 2011. I believe it has been very beneficial in my treatment. In my case it seems to smooth out my gait so I don't shuffle and drag my toes. I had a few scary falls the first year I was on it, but my balance has improved quite a bit over the past couple years.

I do believe that it has slowed the progression of PD, or at least for me it has seemed to do so. I have made one minor change in my meds since the end of 2011.

Cole50 - congrats on the new neuro!! Terrific to hear that you found someone that "gets" what you are telling him and listens to what you have to say.

I just found out my "miracle worker" is leaving to go back to CA. She was the only movement specialist in the state. I am in a panic mode now waiting to see if the recruiters come up with a replacement. Your guy sounds pretty good - does he travel?

Best of luck with the Azilect. I will be interested to hear how it works out for you.

Thanks, Shakey.

I don't know that my neuro travels. He is with Scott & White and recently moved to our area which is building a new S&W hospital. They have an operational clinic. I live in Central Texas.

I received my Azilect Thursday, and so have been on it less than a week at this point. Probably not long enough to tell how well it might help me. From what I've read, that can take 2-8 weeks before I know that. But so far, side-effects have been minimal. The only one I can definitely identify at this point is minimal dyskensia symptoms, probably due to magnifying the effects of the dopamine, and my left arm goes through periods of feeling jittery. Sort of like what I imagine restless leg syndrome to be, except in my arm. Makes it hard to get comfortable enough to fall asleep at night.

As a matter of fact, that's why I'm up tonight. Woke up at 3 am and couldn't get back to sleep. So decided to be productive at least. lol.

There are periods it seems it might be helping, and times it doesn't. In another week and a half I figured I'd update my doctor on how it is going. I'm hoping to have a better idea by then whether this is having any positive effects, and advice on any lingering side-effects.

Cole50,

I also had some sleep problems when I first started taking Azilect but they did subside as time went by. In the beginning I made a few minor adjustments to my medication (slight reduction of Sinemet) schedule, moving the time I took one med from pm to am. Minimal side effects this early in the game might be an indication that you will be able to tolerate the drug and thus benefit from it.

I realize Azilect is a controversial medication and not all can tolerate it, however, I do believe I have improved function because of it. You are wise to keep in contact with your neuro as your body begins to adjust to the medication. Don't forget to keep the literature handy for reference in case of new symptoms.

Best of luck to you. Keep us updated on your progress as it is always helpful to know what happens when trying a new protocol.


P.S. Texas is a little far for me to travel for an appointment, although perhaps this could be an opportunity to try video chat medicine.

I have noticed experiencing slight nausea after taking it for a couple hours or so, but just barely noticeable. Nothing unmanageable. That and the sporadic rogue arm as the Sinemet wears off are the only noticeable side-effects at this point.