To Azilect or not to Azilect?: I was... - Cure Parkinson's

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To Azilect or not to Azilect?

21 Replies

I was diagnosed a year ago and have been working with Dr. C for several months now trying to nail down the correct B-1 dosage......still working on it. In the meantime, my tremors march on and now they've invaded my left arm. A year ago, my neuro prescribed Azilect and I'm wondering if anyone has a strong opinion on whether that makes sense at this point or if there is a better alternative. Thanks for any help! --Patty

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21 Replies
Astra7 profile image
Astra7

Small chance it may slow progression so I’ve been taking it since diagnosis. A straw worth clutching I believe.

Livin_MY_life profile image
Livin_MY_life

I’ve been involved in a study with resagaline and on since May....maybe. Honestly I feel no positive or negative effects. My symptoms have decreased some but I attribute this to the HDT...but it could be the resagaline. I’ll know for sure next May. I’m all for delaying symptoms if the resagaline does infact provide this benefit...i say go for it and if it doesn’t help after a few months DC. May be worth a shot.

park_bear profile image
park_bear

Not much downside. Will not hurt to give it a try.

rhyspeace12 profile image
rhyspeace12

It made my husband dizzy and didn't help his Sinemet last longer between off times, so he stopped taking it and never missed it. I saw on an old statement that our insurance company paid $1500 for it. I hope you get it cheap.

jeeves19 profile image
jeeves19

It was and is a very good drug to me. Recommended.

tupper profile image
tupper

I was prescribed Azilect over a 3 year period, during which time my tremors all but disappeared, I WILL forever be grateful for that period of grace, unfortunately I could not afford to continue. But under Doctor's care I would definitely recommend Azilect.

Mogul1 profile image
Mogul1

Azilect helped me even though I refused to take it initially. My PD symptoms diminished and my golf game improved noticeably. I was able to get back into society comfortably, met a marvelous woman and am now married.

I take 1mg every morning. I struggle with internal tremors when I go to bed. Sometimes will take Azilect and Rytary around 4AM and am usually able to get some sleep.

Thanks so much to everyone who responded. I really appreciate all your comments. BIG help!

Tribselyov profile image
Tribselyov

On it for 6 years. Expensive, not sure if it helps, reluctant to stop.

Priority list is Attitude, Exercise, then meds...

I have had progression but mostly nuisance variety...

Let's enjoy the honeymoon

More to follow... later

ruff1 profile image
ruff1

My husband was on Asilect for about 5 years . In May he was weaned off it so he could start on a newer MAOB inhibitor Safinamide. The difference has been remarkable, much longer on periods it seems to extend his Stelevo by about 30 mins to an hour per tablet. It is also neuroprotective and has reduced his dyskinesia. After being diagnosed for 12 years he is doing really well, golf running gym work, eating well , taking medication regularly, all contribute to his well being 😀

Mogul1 profile image
Mogul1 in reply to ruff1

This is the first time I have heard of Safinamide. I see it was just approved in 2017. Do you know of anyone else using it?

ruff1 profile image
ruff1 in reply to Mogul1

Sorry I don’t know anyone else who is taking Safinamide, it was only approved here in England I think Feb 18 😀

Mogul1 profile image
Mogul1 in reply to ruff1

Thank you. I will stay tuned.

Sunnysky profile image
Sunnysky

Hi Cirripedia

I've been on Azilect now for at least 4 years and it has worked fantastically well several times I've missed it ( very small tablet tend to be clumsy with small things you get my drift ) i knew with in 2 or so hours I had not taken it definitely give it a try

Be Positive

Sunnysky

Thank you everyone for your comments. I didn't realize I sounded so down, but I guess discovering the tremors in my left arm sort of unnerved me! I'm back in the land of positive thoughts......thanks in part to your help! My neuro wants me to start Sinemet instead of the Azilect. I'm uncertain which path to take. I seem to be tremor-dominant. Thoughts???

PDGal4 profile image
PDGal4

My neuro has me taking both, Azilect every morning and Rytary (extended release carbidopa/levodopa) throughout the day. Prior to Rytary, I took Sinemet with Azilect. I didn't think was an either/or but rather can be taken together. Although I could see the wisdom in starting one at a time. If there are any side effects, you'll know from what and also gives the body a chance to adapt.

Personally, one year into diagnosis, I'd go with Azilect first. I am not tremor dominant (I am stiff/slow), but another neuro told me Azilect helps with tremor. I'm 6.5 years into my diagnosis--I walk, hike, although a bit slower than before. Did give up outdoor biking and running though.

hercules957 profile image
hercules957

For those who can't afford Azilect, Selegiline is a good option. I take Sinemet ans the MAO Inhibitor Selegiline extends the Sinemet life for me. It also helps with my mood and it is likely a neuro-protector.

A friend with PD ended up having hallucinations - they came on fairly quickly (within 3 weeks), and his wife was the one that had to tell him they were just hallucinations. And hallucinations stopped when he stopped meds.

Grasss1973 profile image
Grasss1973

My neurologist stated that the purpose of Azilect was to slow or stop the “oxidative stress” in the mitochondria of the neurons. Theoretically, (does anyone really know?) this oxidative stress is what causes the premature death of the brain cells.

So according to my doc, regardless of what else is prescribed over time,

I will always take azilect or its relative, salagiline, because its function is neuroprotection , not disease modification.

Wondering if you decided to take the azilect and if so, how it went ?

Yes, this is my fourth month on Azilect and I'm tolerating it very well. I haven't noticed any relief from tremors, but my neuro is pleased with my progress. I think the fact that it may be neuroprotective makes the expense tolerable!

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