Any good news on sinemet: Recently dgnsd... - Cure Parkinson's

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Any good news on sinemet

jimmydook profile image
18 Replies

Recently dgnsd wondering wot the future holds; seem to read lots of negativity regarding ldopa meds: ;has anyone got any positive storys;as its our main med thanks

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jimmydook
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18 Replies
MBAnderson profile image
MBAnderson

Most PWP take Sinemet, feel it is essential and are well served by it. For me, the decision when I was diagnosed was, do I want to start it now or wait until the symptoms interfere with the quality of my life and try other things in the meantime.

Enidah profile image
Enidah

I started taking it over 5 years ago as soon as I was diagnosed. I'd already had debilitating symptoms at that point for at least 2 years. It has been a lifesaver. I have no complaints, just grateful to have it.

kolsen133 profile image
kolsen133

I have been on sinemet for 4months and my symptoms have gone. Smell is not great though.

Balance freezing shaking hand writing etc have improved markedly.

Rosabellazita profile image
Rosabellazita in reply tokolsen133

Tremor?

kolsen133 profile image
kolsen133 in reply toRosabellazita

Yes that was the shaking

jeeves19 profile image
jeeves19

Rule of thumb is try to stay below 600 mg per day and you should be able to avoid dyskinesia. B1 offsets this aspect as well.

Juliegrace profile image
Juliegrace in reply tojeeves19

Not to sound confrontational, but where did this rule of thumb come from?

jeeves19 profile image
jeeves19 in reply toJuliegrace

I’ve heard it from several sources, some anecdotal some clinicians. But I’m sure that there are exceptions to every ‘rule’!

I have been taking Sinemet since first diagnosed in 2013, and have had no problems with it. In the beginning, I was not taking it properly, but when I started taking it about one hour before meals, it worked like a magic wand. I have been using the controlled release form for a few years now, Sinemet CR 200/50 and it can be taken at any time, and most of the time, it controls my tremor. If I am stressed for some reason, my tremor returns. For my non-tremor or non-motor symptoms, I concentrate on feeding my gut bacteria with bee pollen, plain yoghurt, kefir, frozen blueberries, cinnamon, curcumin and olive leaf extract.

I have no complaints about Sinemet.

gingerj profile image
gingerj

I held off taking it for nearly two years. I've been taking it for a few months now and wish I'd started sooner.

jimmydook profile image
jimmydook in reply togingerj

I was trying to do without it;but think i wiĺl trry it thanks

gingerj profile image
gingerj in reply tojimmydook

Great. I started on 62.5mg tablet twice a day for first couple of weeks. That wasn't enough for me. Then moved up to 125mg twice a day since. At first I wasn't sure but everyone else said how well I was, almost my old self. I noticed that I felt better. More positive, more energy, Less tremor. I can tell when it's wearing off. However I'd say that I feel better all day than I did before I started on it. I've not had any negative side effects. At some point I will probably move up to 3 tablets a day. Hope it works for you too.

hercules957 profile image
hercules957

I waited one yr after diagnosis before starting medication. It was not a good idea to wait. Sinemet relieves all my PD symptoms including tremors. I do have minor dyskinesia though. Finding the exact dosage for each patient is the challenging part.

KLDA profile image
KLDA

Tremor has not stopped, but it is reduced. I was told by the movement specialist I see that Carbo/Levo doesn't totally eliminate this symptom. What I'm thankful for is that I have more energy. I was also feeling anxious and depressed, and this symptom has been reduced.

jimmydook profile image
jimmydook in reply toKLDA

Gives me hope thanks

kommandokate profile image
kommandokate

Been on Sinemet since DX 5/2014. Added Comtan around year 3 with it to lessen "off times" when weakness and shuffling and fear of falling occurred

Began with 3x a day dose; now up to 5x a day. Most folks are surprised when I tell them I have Parky. Have other minor issues-such a diverse disease. Heard it called the "designer disease" as we seem to have varied issues. Warmest regards to you!

jimmydook profile image
jimmydook in reply tokommandokate

Thanks

jimmydook profile image
jimmydook in reply tojimmydook

Thanks

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