Sinemet or Not???: I've been following this... - Cure Parkinson's

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Sinemet or Not???

Park4me profile image
29 Replies

I've been following this post for quite sometime. Read it everyday but only posted a few times.

I was diagnosed in2012, symptoms since 2009. Doctor has me on azilect and pramipexole. He has wanted me on sinemet for quite some time but I have prolonged due to worry of long term side effects. Biggest affliction is the stiffness and rigidity. Is it worth taking and are others helped by it?

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Park4me profile image
Park4me
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29 Replies
arwenmark profile image
arwenmark

My husband has been on sinemet since he was diagnosed in February of 2012 and has had NO other symptoms of side effects. I personally am of the school that it is not the sinemet that causes the problems but rather the progression of the illness it self. That if you never took sinemet that certain people would still simply develope Dyskinesia as the illness went on.

mktbob55 profile image
mktbob55 in reply to arwenmark

Dyskinesia is caused by prolong use of Sinemet (actually only the Levodopa) is its many forms. Dystonia is a Parkinson's symptom

bocababe profile image
bocababe

I have had symptoms since 2011 and was really afraid of taking sinemet until about 6 months ago. My physical therapist said I should consider it. I have been on the absolute lowest dose for the past 6 mos and it really helped me. I don't know your situation (and the severity of symptoms is quite different in each patient) but I was glad I took his advice. I plan to keep it at this low dose as long as I possibly can.

Park4me profile image
Park4me in reply to bocababe

Thank you all for your responses. It helps to hear others experiences.

goosie profile image
goosie in reply to bocababe

What is a low dose for you? I just started Sinemet 25 -100 three times a day

Hikoi profile image
Hikoi

Yes worth taking because it helps symptoms. You are sure to get told it doesnt cure, thats stating the obvious, no one has ever claimed it does but for 50 years people have been treating PD with it.

What long term side effects do you worry about? You can stop taking it at any time (not abruptly of course) and you wont have any long term effects to deal with.

Park4me profile image
Park4me

The shaking getting worse. Jerking. But if it helps the rigidity now I think it's time I quit fighting.

Bailey_Texas profile image
Bailey_Texas

Take it it has no long term side effects. That has been proven. Take as much as you can tolerate. I don't agree with the smallest dose. Please everyone live for today tomorrow is uncertain and never comes. It is always today.

jaberalhddad profile image
jaberalhddad in reply to Bailey_Texas

I totally agree with you

gurdeep11 profile image
gurdeep11 in reply to Bailey_Texas

even 20 pills

Aleagles profile image
Aleagles

Yes works on stiffness and rigidly well does not help with tremor though.

Kaykaykay123 profile image
Kaykaykay123 in reply to Aleagles

It has stopped my tremor but not helping with stiffness and rigidity

Jeansm profile image
Jeansm

I agree with Arwenmark, but understand your concern. I eventually gave in to Sinemet and the rigidity was greatly reduced. I feel better than I have in 10 years.

Pelley profile image
Pelley

I have been in Sinemet for 11 years and it is still working fine. I've been lucky enough to have been treated and followed by Mayo clinic in Rochester MN. since diagnosis at 49 years.

No complaints. It could always be worse.

ramondo4 profile image
ramondo4 in reply to Pelley

What dose of sinemet do you take.

goosie profile image
goosie in reply to Pelley

What strength of Sinemet do you take and how many tablets? I was just diagnosed in November . I just started Sinemet in December .

Park4me profile image
Park4me in reply to goosie

I am not on it yet. 4 1/2 yrs diagnosed. Thinking of starting it this month

mktbob55 profile image
mktbob55

YES

Tribselyov profile image
Tribselyov

"Primum non nocere...." at first, do no harm

I agree with all statements above but everyone is different. One data point is JUST an anecdote but it gets highly personal if it is you. As a stubborn and perhaps bullheaded surgeon retired by Parkinson's, I am limiting all exogenous dopamine. I am 4 years and 2 months after diagnosis. CAUTION: If you push your neurologist, he/she may feel compelled to give you more medicine. Sinemet was so effective early on that I fear it is given by knee-jerk reaction. But, who knows??? I accept that this is a contrary opinion and is not applicable to every person. I will continue to shuffle along.

Tmarsella profile image
Tmarsella in reply to Tribselyov

Are you currently on sinemet? What are your feelings about Mannitol and mucuna pruriens? Thanks

Fwajid profile image
Fwajid

sister age 70 just diagnosed 2 months ago V apprehensive not allowed to drive now ever was quite active before On cinemet now Pl advise how best to deal with it

I support the view expressed by arwenmark . I have been taking Sinemet since 2013, and am currently taking the Sinemet CR 200/50 appr every four hours in the daytime only. I also take supplements in the form of curcumin capsules and cinnamon also. At night, before I go to bed, I take a mega-b vitamin tablet, as the Parkinson's medication seems to clash with essential b vitamins. For me personally, everything seems to be under control, and controlled well. Age may also be a factor, I turn 69 in May this year. My previous right side tremor, especially my right hand, rarely happens at all now.

bassofspades profile image
bassofspades

Do not poison yourself with sinemet! Carbidopa will make you dyskinetic as it binds to vitamin b6 receptors. Look at marty hinz's research, i urge you. ncbi.nlm.nih.gov/pmc/articl...

Toogood profile image
Toogood in reply to bassofspades

What do you take if not that

in reply to Toogood

see what I take without C/L on my Profile page

Toogood profile image
Toogood in reply to

What’s CL

in reply to Toogood

carbidopa levadopa

in reply to bassofspades

dyskinesias, and dizziness. In some individuals, levodopa may cause confusion, hallucinations, or psychosis. Motor fluctuations develop in about 40% of people treated for 4-6 years.

GjyshiDavidi profile image
GjyshiDavidi

I take 2x5 /day of Sinemet tabs after DBS; seems to help.

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