Diagnosed almost 4 years ago and for the first three years the sinemet dosage was pretty consistent with my "on" time relief.. but in the last 6 months or so I am getting these daily patterns were the first dose of the day (9am) gives the longest "on" time, about 4 hours then there's a decline so when i get to my last dose of the day "on" time is way down to 30 min or so and now I have to take an extra full tab (250mg) to get symptoms, anxiety etc... etc... calmed for sleep mode and then pop my Ambien CR. I have become very wary of facing my mid to late day c/l doses, since their effect is declining.
BTW, Protein has been an SOB for me! right now i skip breakfast and have a 10mg or less protein lunch, then at night a 20mg protein supper and this diet has helped pick up the declining "on" time of the late day doses. But not taking enough protein is not good, very weak, on and off throughout the day
Thoughts? Suggestions?
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TheLordsWeapon
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You should be able to extend your on-time with C/L CR or Rytary (as previously suggested)...
As for protein intake, I am extremely sensitive too... I eat < 10 grams of protein in my first dosing interval and < 10 grams of protein in my second dosing interval, and then eat as much protein as I want in the third (and final) dosing interval... usually this means supplementing the regular dinner meal (which I eat with my wife and which usually contains some form of meat) with a dedicated "protein meal" (which I eat before my wife gets home from work)... Lately this has been 2 large eggs, sausage, and yogurt...
Note if I eat too much protein in my first and second dosing intervals, my third interval is "ruined"...
Yes its a very big hassle, and don't enjoy food that much anymore, lost 21 pounds in the last 6 months... i did try C/L and the levodopa took to long to get intro my blood stream because of a sporadic slow release process making my "off" time go up 30-40 mi
Keep in mind the the availability of CR is 70% of IR. So for example, 200 mg CR tablet is roughly equivalent to a 140 mg IR tablet (so your need more CR)...
Also note, you can mix "instantaneous release" C/L (aka, C/L IR) with "controlled release" C/L (aka C/L CR), so that it take effect quicker...
For example, I currently take:
Dose #1: 200 mg CR + 100 mg IR (240 mg IR equiv)
Dose #2: 200 mg CR + 50 mg IR (190 mg IR equiv)
Dose #3: 200 mg CR + 150 mg IR (290 mg IR equiv)
And if I am disciplined in my eating, I don't go off in this 12 hour period...
Btw, this is the way Rytary works... Inside a Rytary capsule there are instantaneous granules, as well two types of controlled release granules...
That all said, be sure to discuss any changes to your dosing with your doctor!
There are many things that can impact the availability/effectiveness of levodopa within a dosing interval: protein intake, meal sizes, gut transit time, gut biota, exercise within a dosing interval, stress, ... consider keeping a regular dosing and eating schedule until you have things sorted, and keep a log of what you eat and when, including the PD symptoms you experience, consider consuming most daily protein after the final dose of the day, ditch the mucuna and go with standard formulations, and consider trying C/L CR or Rytary to extend your on times...
He was on sinemet 125 since two years and then our neurologist started him with stalevo 150 which gave him bad dyskinesia so we switched back to sinemet 125 but the dyskinesia continued..
So we started with MP and worked up with the dosage and now his dyskinesia is so much better almost negligible on most days hence the shift
I'm the best I've been for a long while, after multiple regimes tried, including Stalevo, I'm now on Sinemet cr (slow release) this 'trickles' the drug into the body, avoiding the 'hit' of an instant release which can trip 'start of dose' dyskinesia. Added to that is the new comt.inhibitor Opicapone. This is far better for me than entracapone which is in Stalevo. In simple terms Comt's get more L.Dopa from the same tablet, without increasing the strength.
That would be decided by your neuro. I'm on 5 x Sinemet cr 200mg per day and I'm taking 50mg of Opicapone, I seem to remember there's also a 25mg?. I was taking B1 and Mucuna but stopped these as Opicapone is so new very few interactions are logged. My own half-hearted trials suggest my B1 of 1500mg is now a problem. I also found that Mucuna for me was very erratic in its delivery. It is my belief after 10 years with pd that most problems we experience are due to fluctuating drug levels, which are often assumed to be pd related, that is, a worsening of the condition when in fact it is not. Also, the time it takes to adjust to any change in medication is a minimum of 1/12.
This will help you visualize the equivalent l-Dopa levels in his body (black line) as a function of time. With a judicious guess as to the critical effective level of L-Dopa needed to suppress symptoms--progession should make this increase as time goes on--you may get a hint as to why the on times are varying so much. It helped me to time my meds and increase my daily on time from 5.5 hrs to 9 hrs, which made a great difference.
God Bless you, thank you for this, my current 5 hrs "on" time is slowly driving me insane, especially when awake time is 18-19 hrs, that's a a a a a a a long Day 8(
I can relate to that! The graphing app that I mentioned guided me as to the time to take two half-Sinemet tablets (immediate release), which is what almost doubled my on time. I had already figured out by trial and error to space apart by 3 hours successive doses of my 3 Sinemet CR (Continuous Release) tablets.
Since then, I have found I can replace each half-sinemet tablet with 2-3 capsules of mucuna . The reason for this replacement is that the mucuna caps are free from the carbidopa (which I distrust) that is included in Sinemet. Without the carbidopa, the mucuna delivers about one fourth as much L-Dopa to the brain, so you have to take more of the mucuna caps to get the same effect. as the Sinemet.
Hello Sanay! My husband is 55 and was diagnosed 3 years ago as well. If it wasn’t for the Mucuna, he wouldn’t be walking...Sinemet helps very little. He’s lucky if he gets 1.5 hours of on time. What brand of Mucuna (and how much) are you using? My husband uses Zandopa but finds that every bottle is different in terms of strength and efficacy.
You were diagnosed 4 years ago so what you report looks about right. I will give you my list of medications so you can see you have a way to go. It takes about half an hour to kick in and is good for about 2-1/2 hours. I used to forget to take meds on time but now I easily anticipate it. I always refrain from taking more than the prescribed daily dose. hahahahah NOT. My wife gets herself all worried, when I do that but there is no real problem.
One thing that I find very important. ( Funny how some things get to be so important)
The medication is NOT absorbed in the stomach it is taken up in the upper bowls. If you are backed up, full, bloated, constipated, nothing moving, the train has stopped , the meds can not get on board.
I kind of ignore the protein thing a bit and eat dairy before meds to coat an empty stomach. I more worry about what I am eating to keep that train moving.
Just wondering if you have been given the new brand of sinemet which they say is exactly the same but Im sure isn't. I have not been the same since. It waers of quickly. I had to change to it beacause of an apparent world wide shortage.Im going to try Madapor instead I think.
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What to do when things go wrong with PD medications?
Increasing Levodopa too quickly?
Time to try some extended release?
Anxiety when meds wear off.
Sinemet not as effective in afternoon
