severe off-times
 

Have had tremor intensive Parkinson’s since 2001, 76 yo, live alone. Diagnosed by three different Neuro’s (two of them movement specialists) Tremor, stiffness, etc, effects mainly right side. I also have ET, not bad though. Started Sinemet Feb 2012, 3 x 100mg/d, 5 hr apart, increased to 150mg in Nov 2012. Worked fine until Mar 2013. then it would work for an hour or two then turn off and many times not kick-in at all. I had never before experienced off-time so thought I had developed an allergy to the med. The sad part is if my first dose at 8am does not kick-in then my day is pretty well shot. My off-time is dramatic. It comes on within one to two hours with a sudden increase in severe tremor, slowness of movement, difficulty sitting and standing, shuffling gait and no energy for daily tasks. The strange thing is that I feel OK in the mornings with only slight tremor and movements OK. I am aware that if I don’t take the Sinemet I will become weaker so I prolong it until 2 pm then suffer through the afternoon 3 x 100mg 3 hr apart. I am wondering if any of the experts on this forum have had a similar experience and are able to offer some advice as my Neuro apt is several months down the road. Neupro/Rotigitone patch is now available in Canada, would that help? Any other advice? Thank You.

I find the idea of rationing medication to the point that it falls just beneath some arbitrary threshold to be a bit insane. Don't let them do it to you. It is true that polypharmacy (multiple drugs loaded with interactions) can become a bear real quick. But if I tum up my sinemet to 1800 mg from 1600 mg to maintain my QOL, well God bless my pointy little head! Its not a though they have good research telling me that the Devil waits up there at the 2500 mg milepost. The truth is that they know even less than we do! So why do we put up with such foolishness?

I am currently taking, every two hours, a 10/100 sinemet plus a 20/200 CR sinemet. It works out to about eight or nine doses or 2400 mg or so but I am entitled to adjust the CR to reflect the fact that there is roughly a loss of about 25 mg to the matrix used. So, let's say that I am taking net ((200 x 8) less (25 x 8) + (100 x 8) or a total of 800 mg of the "baby" ones plus plus a total of 1600 mg of the "big" ones all of which comes to 2400 mg before I subtract the eight 25 mg credits for the "big" ones (or 200 mg for the little pile that you shaved off earlier)

Hope this helps.
 

I don't think you're even close to maintaining a dose that will allow you to remain on. Start out on a morning without any meds and take the starting dose, whatever that may be for you. the next day bump it up if it didn't result in an "ON" state. Then when you get an "ON" take notice of how long it lasts. This is your interval. I take 2 of the 25/100 in the morning. Then I take 1 every hour, yup every hour. A little bit in the bloodstream all the time. I am able to be "ON" pretty much all day. By taking the 2 in the morning followed up by the additional one in just an hour give me an overlap. The single sinemet lasts approx. 1 hour in your body. These meds don't work on the typical take 2x a day, 3x a day instructions. You need to find your effective dose that produces an "on" and then your interval or how long this lasts for you. Everyday will be different depending on many factors such as stress, what you eat, how active you are, how well you manage the medication clock, even whether or not you are "constipated".
I do not take the CR because it takes too long to get me up and running. The reason you are doing well in the morning is because the brain can rest and build up a little bit of dopamine at night. Hope this helps you.

What works for me
 

My neuro/MDS and I have worked out a carbi/levo regimen of one each of regular 25/100 and 50/200CR first thing in the AM, repeated at 3.5-4 hr intervals throughout the day. This gives me a resonably fast start and seems to provide a "floor" of meds level to keep me on during the day. I also take one 100mg amantadine with the first carbi/levo "hit".
I am fortunate to experience very little dyskinesia, so far, and have been taking carbi/levo since day one of my diagnosis in April of 2001.
I also still take 4mg of dextromethorphan every night, having begun in 2005. Progression continues, but at what seems a slow rate.
Robert
p.s. I should add that, in addtion to only slight dyskinesia, I have never had much tremor, and increasing carbi/levo as progression continues does not create problems for me. My neuro told me at my last checkup "you can't take too much (carbi/levo)".
R

I agree with those who replied
 

One must try to find an optimal dosage of Sinemet (or whatever form of dopa that is available) along with perhaps agonists, MAOI-B,or COMT inhibitors or other anti-pd drugs, along with developing a natural intuition which allows for optimal PD chemotherapy. You can't undermedicate and expect to be as functional, without dose increases as time wears on.

COMT inhibitor
 

I have a similar problem with meds (Madopar 100/25) suddenly lasting only 90 mins approx so all of the comments have been helpful thanks. I currently take meds 3 hourly.

I have very recently added Entacopone, too early to comment on how well it works. I notice with interest that some here appear to have shortened the time between doses rather than add entacopone. I'd be interested in hearing why/how you make that choice.