When I take sinemet for the first 45 minutes to an hour I have terrible tremors anyone has a solution for it

[Yhae]

Does taking a higher dose of sinemet help to reduce tremors and will it kick in quicker?

[park_bear]

Are you taking the immediate release version? If so, you may be experiencing dyskinesia from overdose. I would switch to a time release version - Sinemet CR or carbidopa levodopa ER.

[Yhae in reply to park_bear]

‏thanks so much for your advice

[Hidden in reply to park_bear]

This evening I will only take ER C/L 100mg, down from 200.

[NanCyclist]

If I exercise, the meds kick in faster.

[Bcarroll]

It is a reaction to the drug)! I have it too it drives me crazy! I am trying to get off of this poison but I am ao addicted to it - so if anyone anhelp me get off this night mare drug lhet me know - the reactions get worse as time goes on

[ConnieD in reply to Bcarroll]

What about using some Mucuna, replacing even one of your Sinemet doses with Mucuna. That’s what I would like to try. One dose a week switch over then once your only taking Mucuna slowly reduce that. I think Sinemet has side effects that Mucuna doesn’t. You should check with your Dr. since I am not one. Just something I might try.

[johntPM]

Thae,

Can you please provide a little more information that may help us to understand what the issue is:

- what is your daily drug regimen (drug, time, dose);

- what and when do your symptoms occur;

- you mention that you have intense tremors for the first 45 - 60 minutes, do you mean this exactly, i.e. the moment that you put a pill in your mouth that tremors start;

- are you sure the symptoms are tremor and not dyskinesia?

- if you bring forward taking the dose by 5 minutes do the tremors start after 5 minutes, i.e. at the original time, or if you delay a dose by 5 minutes, do they start 5 minutes before?

- when do you eat?

John

[Hikoi]

Yes meds trigger tremor almost immediately and it can last up to 90 mins. Wish I knew the answer. Tried stronger and weaker, not winning!

[Hidden]

This sounds like a form of diphasic dyskinesia... which occur in the when you are going from off to on and/or from on to off. And what you describe is the going-on phenomenon... The only solution that I can think of is to go on as fast as possible... to minimize the time spent in this transitional state... and as far as I know the fastest way to get on, is with liquid Sinemet... The excerpt below says it takes only 20 minutes!

From mayoclinicproceedings.org/a... :

"Liquid Sinemet as Rescue Therapy

Administration of levodopa dissolved in water or other liquid was proposed several years ago for long-term treatment.18 Most patients find this too cumbersome to use on a regular basis, and few continue with this regimen beyond a few weeks or months. The pharmacodynamics, however, are favorable for use as rescue therapy for sudden “off” states. Liquid Sinemet takes effect after about 20 minutes, with a response duration of 60 to 90 minutes (usually closer to 60 minutes). Patients concerned about getting trapped in the off-state while on the golf course, in a shopping mall, etc, may carry a flask of liquid Sinemet that is ready for use.

The conventional regimen is 1 mg of levodopa plus 2 mg of ascorbic acid (vitamin C as a preservative and antioxidant) for each milliliter of liquid, mixed daily.18 For example, five 25/100 immediate-release carbidopa-levodopa tablets and 1000 mg of ascorbic acid are dissolved in 500 mL of tap water, soft drink, or fruit juice. This combination allows easy dosing by milliliter; specifically, 1 mL of this solution equals 1 mg of levodopa. Subsequently, investigators recognized that, if the solution was used the same day it was mixed, the ascorbic acid was unnecessary.19 To use as rescue therapy, patients may take the same amount of levodopa as they would take in tablet form, although anticipating that the effect will be brief (ie, about an hour). Premixed liquid Sinemet should not be stored in a hot environment.

There is an alternative, easier strategy for using liquid Sinemet as rescue therapy. Patients who need a quick “on” response can dissolve their usual dose of carbidopa-levodopa in a glass of water, soft drink, or juice (well-stirred). This requires no measurement, provided they drink the entire contents of the mixture. As with the premixed formulation, this should take effect in about 20 minutes. Once the levodopa on-response has been recaptured, patients can take their usual dose of carbidopa-levodopa tablet(s) in anticipation of the liquid Sinemet effect wearing off after 60 to 90 minutes."

Good luck!

If you try it, please report back: 1. how long did it take you to go on with the liquid sinemet?... 2. Was the troublesome tremors eliminated in this same interval?...

[Yhae in reply to Hidden]

Thanks so much for sharing

[Hidden]

FYI, here is an excellent diagram which illustrates diphasic dyskinesia:

imgur.com/a/sHzIE77

and you can also see the more common peak dyskinesia...

[lenamm]

Yes I had severe diphasic dyskinesis - about six hours of severe convulsion type tremors a day going on and off. ER was better than IR - with IR I never got on time - just all tremor. Nicotine helped slightly. In the end I opted for a FUS surgery in Switzerland. I tried Amandatine, agonists, Rytary - all made me worse.

[Yhae in reply to lenamm]

You chose to do f u s in Switzerland because you live there or there they have a better success rate

[lenamm in reply to Yhae]

I live in the US. The surgery I got is only offered in Switzerland sonimodul.ch/home/parkinson/

[Yhae in reply to lenamm]

isn't it the regular focused ultrasound that is offered in the US when I checked last they have eight sites in the US that they perform the surgery

[lenamm in reply to Yhae]

It is not - the Us procedure only treats tremor and can only be done on one side. This one is way better! There is a great thread here healthunlocked.com/parkinso...

[Yhae in reply to lenamm]

if I may ask how many years do you have PD and what was the cost of the surgery

[lenamm in reply to Yhae]

4.5 years $35,000 CH = $36,000 US last year

[Yhae in reply to lenamm]

thanks

[lenamm]

If I took higher dose it was slightly better transition wise but I also got peak dyskinesis and that got much worse and over time the higher dose the worse the diphasic dyskinesis. So in the end I tried to stay on the lowest dose I could and spent a good amount of time "off" which was actually better than "on"

[Yhae]

thanks to everyone