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Levodopa
A MyParkinsonsTeam Member asked a question 💭

I have been on levodopa for the past few years and found that it worked fine. However lately I find that it stops working after about 3 hours leaving me shaking badly (for about 3 hours). . Has any one else experienced this and if so is there a way to stretch out the time so that it works for the whole day.
Many thanks

posted September 16, 2018
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A MyParkinsonsTeam Member

@A MyParkinsonsTeam Member, talk to your neurologist about the timing of your medication. A six hour interval seems like a long time between doses. I take mine every five hours and Requip at bedtime.

As you can see by the other answers, there is no shortage of different medications that may help you. Since PD affects us all differently, finding the right combination can take quite a bit of trial and error over an extended period of time. Before you embark on that "journey", you may want to ensure that you are adhering to the 30 minutes before / 60 minutes after eating rule when taking your levodopa as it can make quite a difference in the levodopa's efficacy.

What about your diet? Carbohydrates early in the day and save the proteins until later as the proteins lessen the effectiveness of the levodopa.

Are you exercising consistently and vigorously? Exercise, especially vigorous exercise, can cause our Parkinsonian brains to use dopamine more efficiently.

I'd talk to your neurologist about the anti-depressants. You may find that you need to do some trial and error to find the right one for you.

If it helps, I also love to read and have a difficult time concentrating and gave up driving at my family's request.

I hope you find this helpful.

posted September 18, 2018
A MyParkinsonsTeam Member

My understanding of what seems to be lowering effectiveness of levocarb over time is actually just the degenerative nature of our disease. As more of our dopamine producing cells die off, we need a higher level of levodopa in our blood stream to compensate and carbidopa to reduce the direct effect of levodopa on our muscles.
I'm in Canada so some of the drug commercial names are different but still the same formulation. I didn't tolerate the extended release form of levocarb very well with stomach problems and dizziness. I tried Stalevo instead which has worked very well for me for a couple years. We had to add additional levocarb as time went on because the levocarb eventually wasn't enough. Then we added pramipexole, and now amantodine. These changes were made at 9 month to one year intervals as my disease progressed. I have fairly rapid progression. Now I'm getting prepared for DBS in the spring because I'm at the end of the four medications limits. I think I've seen the progression from a different vantage point than most because of the accelerated schedule. I would say that we should all expect to be increasing and adding medications over time. Don't get too wound up about it. Enjoy this amazing life now. Make it the best life you can.

posted September 17, 2018
A MyParkinsonsTeam Member

Sinemet is the best medicine so far. Seems that neurologists try to control the administration with quantities or timing. Beyond that there are approx. 200 drugs that have some effect on some patients - finding the one for you is a lifetime project between you and the movement specialist. I'm on the 3 hr per 25/100 pill at present - yes that helps most of the times, but I can't sit there with a stopwatch waiting for the next pill time to arrive - so I do the best I can if I'm in the middle of painting a room, cutting the lawn, on a shopping trip..... 4 times a day was bad enough! Yes there is the on/off in between - that some times is over 1 hr no matter how frequently you replenish.
One suggestion: ask your Dr for the 50/200 extended release version for night time use. It keeps me relieved during the night and helps me sleep, despite some Dr advice that you don't need any Sinemet during nite time. It works for me with a special benefit - it allows me get up in the mornings - without it I have a difficult time getting out of bed due to pain and stiffness.

posted September 26, 2018
A MyParkinsonsTeam Member

Probably is dyskinesia many PD medication present this persistent movement and is related to an increase or a low dose sometimes we do not need to increase dose but the timing frequency may help consult the neurologist.some people cut sinemet in 2 half and use half more frequently as an example.

posted September 21, 2018
A MyParkinsonsTeam Member

Yes, i have been on a regiment of one levadopa every four hours since first diagnosed (5 years ago by a world renowned neurologist here in Edmonton, Alberta). Also, i have been having leg pain during evening - related to the PD - and it was suggested that i could take an extra half tablet at dinner time. So I think the sooner you see a neurologist, the better.

posted December 10, 2018

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