Are you on Sinemet? Is it worth the side ... - Cure Parkinson's

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Are you on Sinemet? Is it worth the side effects?

Jerebet profile image
22 Replies

Seems that a lot of PWPs on this site report side effects.

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Jerebet profile image
Jerebet
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22 Replies
SherriW profile image
SherriW

Hi -

I have been on Sinamet for several years now (I'm 51) and have not experienced any side affects with it.

Jerebet profile image
Jerebet in reply to SherriW

Thank you Sherri, my Neurologist is suggesting I start taking it.

rch21 profile image
rch21

I am on it with minimal side effects and significant benefits - it has greatly reduced sudden arm/head jerks, reduced "vibrationing hands", rmimized tremors, reduced the feeling of feet rooted to the ground. This week my neurologist doubled my night time dose of Sinemet slow release to 2 tablets of 50/200 and last night I actually slept 6 hours straight (do not know when that last happened). I know side effects do occur, but as of yet I find it to be well worth it. good luck - hope it helps.

rch21 profile image
rch21 in reply to rch21

may have given the wrong impression that I only take it at nigth - also take regular Sinemet 5x/day, 1 1/2 tablets of 25/100. Again, hope it works for you

Jerebet profile image
Jerebet in reply to rch21

Thank you RCH

tlongmire profile image
tlongmire

I take Sinemet 1 1/2 tablets 25/100 4 x/day. I have not had any side effects but I'm also not sure how effective it has been for me either.

Beachdog profile image
Beachdog

So far so good with my generic C/L ER version ... 25/100 2x per day. Will soon have to up the dosage I think but no side effects ... yet. Oh a touch of dyskinesia has popped up ... look like a bobble head at times.

PatV profile image
PatV

I've been on and off it 7 years now. Without it my left ankle is totally rigid and I walk like Igor. I've gone off it to try Stalevo and Azilect and I asked to be put back on C/L. I started off with what I was told was minimum dose 25/100 4x a day. I've added a time release same dose at bedtime. Only side effect I perceive is water retention and constipation. Some dyskinesia now too. Good luck.

MagicMax profile image
MagicMax

My neurologist started me on sinemet when other meds did not work. It worked great until she increased my dose to 5 tablets 25/100 mg five times per day. This caused severe dyskoneisas (SP, sorry). I started walking 2 miles or more per day and slowly cut back to taking 2 tablets twice a day. Now all is well for over 2 years. Also, ask for the Teva brand of sinemet (it seems stronger than other generics, less stomach aches, less allergic reactions, same price).

DeParkiePoet profile image
DeParkiePoet in reply to MagicMax

thanks for the heads-up on Teva

MGirardi profile image
MGirardi

My neurologist has me on Sinemet 50/200 twice daily slow release. No side effects that I know of. My tremors can break through after aprox. 6 pm. Then I'll take one glass of wine or a xanax or in some cases a puff of mmj indica/kush and that will knock out the tremors for the night . It's important to note that only ONE of the three do I use per night as needed.

Anemone profile image
Anemone

When I started on Sinemet less than 2 years ago, it was as if my life had been given a new lease. I have no discernable side effects. I would fight anyone who tried to take it away from me. I can move, I can talk, I can cut my own food. I'm not the other me. I will never be again, but I am one heck of a lot more me than I had become. I never am without Sinement.

Owenbob profile image
Owenbob

When I first started on Sinemet it made me terrible sick to my stomach. I worked at it till I now take 2 after every meal. I'm sure it has done a lot for me. But then I will never know how much.

I seem to get a lot of side effects from meds. Found Carb/Levo 100mg 4 times daily was helpful without side effects. My Dr. then changed me to Stalevo 100mg 4 times daily & Carb/Levo 100mg once and I'm doing quite well.

Jerebet profile image
Jerebet

Thank you everyone for the feedback

DAUGHTERofPD profile image
DAUGHTERofPD

My Dad has been taking Sinemet for about 15 years. He is now up to 2 1/2 sinemet, + 1/2 tablet of Sinemet CR 9 times a day. In the last 6 months I have seen major changes in his ability to focus, rationalize, calculate and comprehend any type of daily or weekly schedules. It did wonders for him for many years, but now I'm seeing the dark side of the disease and medication. The disconesia is nothing to worry about, compared to what happens to the thinking process and memory. That's what is worrying me.

DeParkiePoet profile image
DeParkiePoet

I take 3 25/100 3x daily. but i feel like a junkie who needs a fix after 3-5 hours. start slowly and titrate up until you are comfortable. i echo the comment that the side efx are worth it. I'd love to stop taking it though, not to be in the near future. I also take Requip xl 6mgs 3x.

MagicMax profile image
MagicMax

Levadopa has been the industry standard since 1960 to minimize the symptoms of PD. However, if one takes too little, it does not work. If one takes too much, they wind-up up with dyskonesias; usually a foot that jerks without warning. If you balance how much you take you are good to go for 6 to 10 years, then your body no longer reacts to L-dopa.

C-dopa was added to reduce upset stomachs. Also, some generic sinemets can play havic with your stomach (usually due to the filler used or an allergy to the yellow dye that is added. I find the Teva brand of sinemet works the best.

Hikoi profile image
Hikoi

What side effects were you concerned about Jerebet? I am on Madopar, which contains levadopa as does Sinemet. I find it veryeasy to tolerate. Levadopa in its various forms is still the gold standard treatment for Parkinsons. No other medication is as effective. I think we are getting better at adjusting dosages for maximum benefit for minimum medication.

dubdiva profile image
dubdiva in reply to Hikoi

Can't type today is siminit andb levafopa cab I'm sorry the mix the

Same? Also is there danger off weight gain oitt?

I've eating. Is sues thank iu!

shasha profile image
shasha in reply to Hikoi

hi hikoi,

i too am on madopar or modopar here in france - i have found sinemet not be as effective nd made me sick too .. so what is the difference in th etwo tyioes of levadopa ?

PatV profile image
PatV

I'd SAY yes, but after 7 years I get dyskinesia sometimes which I control by upping my protein intake and getting up and getting active.

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