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In Remembrance
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Join Date: Aug 2006
Location: Florida
Posts: 3,904
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In Remembrance
Join Date: Aug 2006
Location: Florida
Posts: 3,904
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the question that won't go away
Hi xaxa,
i'm not a doctor, i'm an advanced patient [20 years]and this is how it went with me. i now have to take it every 2 hours.
I would wait to take sinemet, but not for the dyskinesia reason. I waited 10 years from when motor symptoms began and 7 or 8 yrs post diagnosis to start sinemet. I was pretty miserable when I finally went on it, but my neuro was a firm believer in waiting, and believed it would eventually, as he puts it, “turn against you.’
I went on sinemet because eldepryl and mirapex were no longer working. My first neuro knew his medicine but he did not understand requip. He put me on 2 mg to titrate up…2 mg didn’t make a dent in my symptoms, and after calling requip, they said it wasn’t therapeutic till 9 mg [don’t quote me on that number but you can see how insufficient it was.], he still wasn’t convinced. I was also taking permax…ick. Off with chest pain. At that point, I had pd for approx. 10 yrs. The problem was, my neuro had never seen me off.
I had to go thru a hurricane evacuation in that condition. It was torture. Immediately after the storm I went to the neuro 'off' – that was my only choice, didn’t have meds to get on. He put me on sinemet immediately.
So how long you wait is individual…I went too long.
I got dyskinetic right away. So the 3 yr honeymoon may be for early stage pd only. So yes I avoided dyskinesia before sinemet. But my neuro was dead right about it turning against you. Now I don’t feel that much better on than off. The sinemet is causing many cognitive and behavioral difficulties. It causes it’s own set of movement problems including slurred speech, facial problems [as the day goes on I feel worse and my mouth looks like a beak. I can’t pronounce clearly and I feel crazy, panicky, have no appetite and can’t sleep from all the sinemet.
That’s why I would wait. Sinemet – a love/hate relationship. But the love is almost gone. There is just nothing else. I'm 59.
Only an opinion, disclaimer here – I’m not a doctor, I’m one who is living it. So I’ll end with the PD mantra:
Everyone is different.
Best to you,
paula
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paula
"Time is not neutral for those who have pd or for those who will get it."
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