I stopped taking Azilect: Diagnosed on... - Cure Parkinson's

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I stopped taking Azilect

ABDESSLAM1 profile image
23 Replies

Diagnosed on April 2014 . I was taking 1 azilect 1 mg a day . Did not help my tremor after 1 year . My Noro start me on C/L 3 times a day + 1 Azilect . My situation improve thanks to C/L .

But I still have fatigue and most side effect . I decided by my self to eliminate Azilect and take only C/L 3 times a day. I feel a lot better and most side effect disappear . I am 66 years old play one and half hour soccer games twice a week.exersice and jogg . I read that the FDA never said that Azilect slow the progression of PD . There is no prove. But PD is different from one person to another.

Each one of us react different to different medications.

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ABDESSLAM1 profile image
ABDESSLAM1
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23 Replies

Yes. Each one of us react different to different medications.

parkie13 profile image
parkie13 in reply to

ci6.googleusercontent.com/p...

Relating to your sleep question

Hi comma this is probably nothing knew nothing that you Already don't know at the end of it there's a little quiz it's kind of fun if you got time you might want to read through it Mary

parkie13 profile image
parkie13 in reply to

p.nytimes.com/email/re?loca...

Here is the right link of a sleep test Mary

There is some argument, is Azilect neuroprotective. The testing showed that 1mg is but 2mg is not. That has a few Doctors scratching their collective heads.

BUZZ1397 profile image
BUZZ1397 in reply to Serenity_finaly-1

Hi HAL 9000. I am not surprised that a "normal/therapeutic" dose is hard to know. I break my 1 mg azilect into aboout a 3/5 mg because taking more caused me to experience difficulty emptying the bladder. I hope it is neuroprotective as it is doing the opposite to my bank account. :)

Serenity_finaly-1 profile image
Serenity_finaly-1 in reply to BUZZ1397

I hear you.

Bailey_Texas profile image
Bailey_Texas

i stopped azilect qnd my night time depression whet away.

TheresaCurley profile image
TheresaCurley

Yes, each one of us is different. I'm on Azilect and Sinemet (C/L) 3 times a day 25/100 and my symptoms have been greatly reduced. My Neuro said the Azilect is not for the symptoms but to slow down the progression. Maybe the FDA never said it, but my Neuro seems convinced. I've passed the side effect stage, it only lasted a week.

4000Nights profile image
4000Nights

True that Azilect doesn't help much with symptoms. However, and this is a big however, it may significantly slow progression. I have been on Azilect since I was diagnosed four years ago and have had zero progression. I also take C/L for symptoms but have cut back on that to one or two per day because three made me tired. I would strongly urge you to reconsider your decision.

p-p- profile image
p-p-

Please explain to me what C/L 3 is ? I am 73 years old and I take Azilect and found that the medicine extends my Rytary (lasts 5 hours )The same medication carbo-levidopa (which lasts 3 hours ) only this medication is new and without good insurance it costs $800 a month.In regard to tremors, the drug Azilect along with some other med.s completely stopped my tremors ! Sincerely, Pam

Hikoi profile image
Hikoi in reply to p-p-

azilect.com/support/pap

ASsistance with Azilect cost

YOPDportlander profile image
YOPDportlander in reply to p-p-

p-p-, C/L 3 I believe is referring to Carbidopa/Levodopa, and 3 pills a day. C/L is also the main stuff in Sinemet, just the generic version. Hope this helps! :)

Bpetie6 profile image
Bpetie6

I'm not usre if I would do that or not. How long have you had PD? I am in my 17th year and didn't start taking Azilect until a year ago. My C/L works better and all of my symptoms have improved, just slightly but have improved. I am 39. I know it is expensive but I'm be helping keep your symptoms from progressing quicker?

Serenity_finaly-1 profile image
Serenity_finaly-1 in reply to Bpetie6

WoW!!!!!!!!!!! You where diagnosed at 22. How hard was that for your Doctors to come to that conclusion. I was 44 and went years because I was to young to have Parkinson's.

YOPDportlander profile image
YOPDportlander in reply to Serenity_finaly-1

Indeed HAL-9000 and Bpetie6, I was diagnosed at 34, following almost a decade of weird symptoms... didn't put the symptoms together as anything but maybe depression, insomnia, and carpal tunnel issues until a new boss (who herself had PD that wasn't visible and she never mentioned) told me to go to a doctor and mention her observations. Bingo, it was like a light went on in my GP's head. Weird. I was exposed to massive amounts of pesticides & agri-chemicals all through childhood, then later worked as a welder's assistant and then as a glass blower... All are big "YIKES!" factors, I came to learn during the diagnostic process. I wonder if either of you had similar exposures?

Serenity_finaly-1 profile image
Serenity_finaly-1 in reply to YOPDportlander

I will have to answer yes If working for a hazardous waist lab fits your criteria. There was more than one time my urine smelt like bitter almonds. I also had a major concussion at the age of 18. I ran an ATC into a tree. 3 days in the hospital.

BUZZ1397 profile image
BUZZ1397 in reply to Bpetie6

Improvement (?) You are the 2nd individual I know of that has decided they are improved lately, the first was me. I believed there was no recovering from this bitch of a disease. Knowing you and I are improved even a little bit is encouraging. I am using azilect plus a little bit of C/L and same as you I am using less C/L than before. My improvement consists of less leg stiffness, greater joint fluidity in walking, more use out of my dominant hand for performing daily tasks such as buttoning, tying laces...etc. I was convinced that my apparent ongoing recovery had more to do with some ant bites I received and actually started to seek on a regular basis. After discussing that with the neuro I am less inclined to believe that. I am currently taking 3 weeks off from letting a few fire ants sting me ever 4 days to see if the improvements hold up, as the doctor suggested. Of course they said they want me to let them know. My doctor has a great personality and is familiar with the research on the several compounds within fire ant toxin. They schooled me to be cautious. I hope it is true that we are lucky ones that actually have been Rx something that might help us to get along. I'd rather not be stung by ants in order to maintain the ability to tie my shoes. :)

Serenity_finaly-1 profile image
Serenity_finaly-1 in reply to BUZZ1397

Isn't it crazy the lengths we go?

Coblrman profile image
Coblrman in reply to BUZZ1397

Bee stings are supposedly neuroprotective. Of course ant venom is all over my back and front yards here in Texas.

Astra7 profile image
Astra7 in reply to Bpetie6

That is very young. What were your main symptons?

What did you take for the first 17 years? Just wondering why you didn't start with azilect.

Bpetie6 profile image
Bpetie6 in reply to Astra7

I was offered it and took it for a few days, but it gave me dyskenesia or more of the dytskenesian than I already had so I elected to not take it.

Popeye529 profile image
Popeye529

Azilect turned me into a cry baby. I would cry about ??? Anything/everything it was terrible.

YOPDportlander profile image
YOPDportlander

Similar response to that whole group of similar agonists; diagnosed in 2004, have tried ALL the different agonists. Now take C/L 5x day and no other PD-specific meds. The agonists turn out to not only be unhelpful for me, in the end they were really unfortunate. After staying on selegiline for several years, I developed the 'Impulse Control Disorder' issues that NO ONE had ever mentioned to me, not a single Doctor. I'd taken both the Azilect and selegiline hoping for more 'on' time and for the hypothesized neuro-protective/ progression slowing effects, and, for me also at least, it was a very negative experience. Of course, as you said, they work well for many people; I guess we're two in the other column! Best of luck and all good wishes to you, Abdesslam1 !

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