Sinemet or Not???

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?

24 Replies

  • 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.

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

  • 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.

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

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

  • 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.

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

  • 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.

  • I totally agree with you

  • even 20 pills

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

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

  • 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.

  • 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.

  • What dose of sinemet do you take.

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

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

  • YES

  • "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.

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

  • 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.

  • 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.

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

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