TAPERING OFF AZILECT: I've had PD x 6 yrs... - Cure Parkinson's

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TAPERING OFF AZILECT

jombi profile image
23 Replies

I've had PD x 6 yrs. I take mucuna only(and many supplements)). until 3 wks ago when I started one half Azilect as welL I was feeling fairly good except for thinking and memory issues on Azilect. They concerned me enough that I decided to taper off Azilect. I cut down to a quarter of a pill for a week, then 1/8 pill this week. I feel really louzy, PD symptoms all worse, etc. this apparently is withdrawal. Any tips appreciated and any knowledge how long this might last. Many thanks

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23 Replies

Switch to high dose thiamine hcl

jombi profile image
jombi in reply to

Thanks Roy. I already take but may try to increase

in reply to jombi

Therapeutic dose is 4g daily

parkie13 profile image
parkie13

I also felt horrible and had brain issues, could not remember anything. I was on it for about two and a half months and I went cold turkey off it. I was feelings angry, for about two weeks. At the time I was taking mucuna.

Despe profile image
Despe in reply to parkie13

My husband also had brain issues, confusion to be exact. We were not sure what was the reason, but after a few weeks, we realized that Azilect was the cause. He stopped it without tapering. He feels a lot better now!

parkie13 profile image
parkie13 in reply to Despe

I couldn't figure out what it was. Finally I started just being sick from it, like not feeling good and I still didn't know what it was. But once I thought that's what it was I stopped it. However, it seems like it agrees with some all of the people because they've been on it for years. And I did notice once I stop that I wasn't moving as well.

PDGal4 profile image
PDGal4 in reply to parkie13

I am one of those. I have been on it for about 7 years, no issues. Assume it's doing something positive, but no negatives that I've found.

Despe profile image
Despe in reply to parkie13

Yes, Mary, it might help with movement, but it doesn't help the brain for some people.

jombi profile image
jombi in reply to parkie13

thanks parkie13

jombi profile image
jombi in reply to parkie13

Thanks for input

PDFighter13 profile image
PDFighter13

Since Azilect helps sinemet last longer I would guess that maybe it is helping your mucuna last longer also and maybe that is why you aren't feeling as well. I take Azilect and Sinemet. I tried not taking the Azilect any more because I wasn't sure if it was helping and I noticed a big difference. I am back on it now.

Hikoi profile image
Hikoi

Your symptoms are likely worse because the Azilect (rasageline) enhances other meds. Selegeline an earlier form is the favoured drug of John Pepper. He believes it will activate dopamine some how!

jombi profile image
jombi in reply to Hikoi

Thanks Hikoi

MarionP profile image
MarionP

Azilect is one of those nasties that helps some people but is bad for other people. it also carries some possibility of permanent negative side effects or irreversible perhaps is the word so that when you withdraw off at your left at the side effects. so it took some thought ahead of time, some serious thought and discussion with your prescriber, before you commit to taking something.

The value in it is that azilect may slow the onset of Parkinson's, in addition to helping treat some of the dopamine depletion.

That means your responsibilities as a patient is to ask questions and that means look up ways to ask the questions. It really is not good as a patient if you don't have questions, and many of them, for your prescriber... Such as why this one, what are you thinking, what about the side effects and the trade-offs for me to think about before I say yes...these are your responsibilities as the patient, not the doctor's responsibility. Very serious stuff.

So hopefully your licensed prescriber told you about those so that you were fully informed or wanted to be fully informed. Then do as much online reading as you can.

jombi profile image
jombi in reply to MarionP

Thank you Marion. Good advice

Design8 profile image
Design8

Azilect was the first thing Dr prescribed for my husband, it exacerbated his anxiety had sweats, moody & confusion, even a little obsessive thinking. I read up on it, asked a lot of questions, saw that they were side effects. The doc said he may have an upset stomach but most people do well on it no big deal, while it was a big deal for him. We stopped cold turkey not sure that was a good idea but it took a good month to get out of his system. He has difficulty detoxing and very sensitive to most medications.

jombi profile image
jombi in reply to Design8

Very helpful. Thanks

lenamm profile image
lenamm

On 1/4 of an Azilect a day I went from walking almost normally to not being able to make it to the end of the block and feeling dizzy and my brain felt too hot. Stopped it after a week and after two days was back to my normal.

jombi profile image
jombi in reply to lenamm

Màny thanks

Rocke profile image
Rocke

I've been on azilect for over 6 years. Used to pay $100 for 3 months, now it jumped to $400 for 3 months. Same insurance. Called my insurance and the company, was told that's the price. I'm not eligible for any of the so called discounts. No explanation as to why the price increased so much. I'll either be going off if it or looking for a Canadian pharmacy.

Kwinholt profile image
Kwinholt in reply to Rocke

Rocke, I’ve been on azilect for over 6 years , the only side effect I had was at the beginning and it was sleepiness. It was more expensive at the beginning too but there is a generic available now . I pay $10 for a month supply. And I am a big advocate that not all generic manufacturers are the same . I am proof with my CD/LD. Insurance and pharmacy prices are a big racket unfortunately. Karen

Rocke profile image
Rocke in reply to Kwinholt

I've always used the generic. In my opinion it's all greed from big pharma

mgregor6 profile image
mgregor6

Hi. My 1st thought was you need to compensate for the loss of medication when you cut down on the Azilect. I would up the mucuna and start the B1 HCL if you haven't already.

I am on stalevo, mucuna(Zandopa brand), B1, and 100% pure L-dopa (1/32 teaspoon daily)

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