Has anyone been taking sinemet? I was pre... - PSP Association

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Has anyone been taking sinemet? I was prescribed it but find that it makes me too nauseated to continue.

LyndaEllis profile image
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LyndaEllis
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ray-wiffen-1958 profile image
ray-wiffen-1958

hi lynda,

i have cbd and i started takeing sinemet about 4 years ago

but i could only take the low dose 12.5mg 2 three times aday

the gpp tryed to increase it but it made me feel nauseated, now

they have took me off of sinemet and put me on amantadine which

made me feel 10 times worse so i have stoped takeing them and

hopeing they will put me back on the sinemet,

kind regards

ray

SheilaN profile image
SheilaN

My husband was prescribed Sinemet which was gradually increased over time. The results were negligible, only really effective for up to an hour after taking them. Once he lost his mobility I spoke to the neurologist and we decided that because we didn't really know whether or not the drug was maintaining any of his upper body mobility we would continue. I didn't want him to take the highest dose (875mg) that the neurologist recommended because of the risk of restless sleep and/or hallucinations but he still takes up to 600mg a day.

I had read some promising reports about Amantadine so asked the neurologist to prescribe it.I was warned that my husband might go off and be sleepy and have slurred speech. That's exactly what happened so I did as was advised and reduced the doseage not of the Amantadine but of his nightly Amitriptiline. The effect was immediate, he really perked up, was much more alert and chatty. The carers were amazed and amused because suddenly he was answering back and being cheeky. I was thrilled. Unfortunately the side effects were daily diarrhoea and exessive sweating. I persevered for a month, making sure that he wasn't ever at risk of becoming dehydrated, the doc thought it was OK to continue but in the end I thought the side effects were too much so I stopped the Amantadine. By the next day both side effects had stopped. And I must admit that by then anyway the perkiness had worn off.

But it's worth trying.

Take care

SheilaN

jillannf6 profile image
jillannf6

hi

i have tried both sinemet (nausea and no appreciable benefit) and amantadine ( no benefit)

so am on nothing for the psp but am taking trazadone for sleepign problems

love jill ;-)

Kathy profile image
Kathy

Hi Lynda,

Mum was started on Sinemet immediately after diagnosis (2009) but we saw absolutely no benefit from it and so stopped it fairly soon after. We discussed Amantadine with the neurologist but decided not to try it because he didn't feel that there was much evidence to show it was beneficial in the long term.

Hope you find something that helps

love Kathy x

PSPA_KatH profile image
PSPA_KatH

Hi Lynda

I would advise you to go back to either your GP or PDNS as there is medication which can be given along side the sinemet to reduce the feelings of nausea until your body gets used to taking it. It may also help to take the sinemet with food initially as this will help reduce the nausious feelings but protein does affect the levels of absorption of the active ingredients in the medication. So after a time when you get used to the sinemet you can t return to taking them before food again to obtain the best effects.

Vitruvian profile image
Vitruvian

You need to start low and go slow. I would always recommend taking domperidone with it at the start which removes the nausea. After a couple of weeks the body gets used to it and the problem goes away. Good luck x

jimandsharynp profile image
jimandsharynp

My wife was on Sinemet (carbadopa/levadopa) when they had her diagnosed with Parkinson's. When it didn't have any effect she was diagnosed with Parkinson's-Plus then finally PSP. They kept increasing her dosage over time to see if it would change anything and it didn't. Her max was two pills three times a day. We then went off it gradually to see if that made a difference and it didn't. On or off, no change, it didn't work. My understanding is that it either won't work for PSP or only work for a short period of time for PSP. I'm not a doctor however.

marusela profile image
marusela

my father was taken sinemet and he can not balance and walk very bad, doctor says that suspend it and now he don´t take sinemete anymore cause its does´nt work hugs from spain

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