I am a 72 year old woman who has had pd for 4.5 years. I can't seem to get my dosing of sinemet correct and suffer terrible off periods at least 3 times a day or more. I take 3 C/L ER 3 times a day and 1 C/L IR 25/100 4 times a day and I don't know what time to take the meds to keep my dopamine levels constant . One C/L 25/100 is effective for about 1.5 hours. My dr is no help. Please what dp you rhink?
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After five years I was disabled. I could not brush my teeth, cut my food, open a jar, and more as you know.
I found a news story about Doctor Costantini’s work with Parkinson’s. I am grateful to this day.
He does not sell medicine, book, workshop or charge a fee for his online consult with patients that do not want to travel to his office in Italy. His office visits do charge fee. He is currently in recovery from severe heart issue, not available.
I adopted his treatment advice just from what I read. Good results and I then emailed. He corrected my dose and I continued to have relief.
I wanted others to benefit so on my own I formed a Facebook group. Parkinson’s thiamine hcl
I just joined...thanks
I agree with Roy – Sinemet is good as far as it goes but you need to do something more. High-dose thiamine is helping many in the Parkinson's club:
Also, I find Qigong helpful but it requires dedication:
The app below helps you to answer some of the questions that you ask. You put in the details of each of the pills that you take (time, drug, dose) and the app draws a graph which estimates how your levodopa equivalent plasma levels change with time.
parkinsonsmeasurement.org/t...
John
John I can't figure out what means and what to do with it.
schatsie, I am 73 and technically challenged, so I understand your frustration. johntPM. If a person is taking two pills at a time, would they put 200 for the dose amount? and if taking 3 tablets.. put 300 in for the dose amount? I couldn't see a place to indicate the number of tablets per time.
Note: use 24 hour clock. So 9 pm would be 21 hour.
My graph shows lowest level about 4 am. That is when my tremor starts for the day.
on the chart is 24 equal to 12 midnight?
Yes
That graph is very interesting. If I add a third smaller dose of CR around noon I will hardly have any off time at all
I'm sorry that you're having trouble using the app. There are detailed instructions at the end of the page. But, just to get started, scroll down until you get to a big table. Go to the first empty row of the table and in the first column select 7 hours from the drop-down list, leave the minutes cell empty (it will default to 0), in the drugs column select Sinemet, and write 100 in the dose (mg) cell. Then go to the bottom of the table and press Calculate. This will lead to a graph being drawn. Once you've done that you can add line by line, dose by dose, your whole drug regimen for the day.
The graph should show a saw-tooth pattern. You should see if the low points of the graph match your "off"times. This will give you something to discuss with your doctor.
John
My husband had a lot of off time with Sinemet. He switched to Rytary and it worked very well. You can get help from an assistance organization to pay for it a sit is very expensive. My husband ended up with no copay.
On the RYTARY what times during the day do you take it and what dosage? Thanks
He took 2 of 48.75 mg. -195 mg capsules every 3.5 hours, but not in the middle of the night.
My daughter found this amazing book titled “Natural Remedies in Parkinson’s Disease” authored by Dr. Rafael Gonzales Maldonado., he is apparently a neurologist. We bought it from Amazon. It is loaded with many useful information for Parkinson’s.
I’m about your age, female, dx about five years ago. I’ve been on the same medication for three years: Sinemet 25-100 3 times daily and one mg of Rasagiline once daily.
I have followed suggestions on HU and now off periods are manageable so I’m reluctant to ask my doctor for higher doses or additional prescriptions. I exercise daily, take 500 mg of Vitamin B1 hcl (must be hcl), also NAC, turmeric, CQ10, vitamin D1, citicholine, magnesium. Also eat lots of organic produce and practice spiritually.
Off periods are about 45 minutes late morning and late afternoon and before first Sinemet kicks in when I get up. I plan exercise in the morning after breakfast when energy is best. So far I can push myself to do household tasks during off times by talking to myself, lol. It helps to be retired and have my sweetheart bring me coffee first thing. I no longer go anywhere in the evening. That is pajama time starting around 5 pm.
Hi schatsie,
Do you take your sinemet 30 minutes before food or 90 minutes after food or with food as it makes a big difference. I have never liked taking any medication on an empty stomach but sinemet definitely makes a big difference by not taking it with food, my tremor is much improved since taking the sinemet 30 minutes before food C/l does not like being mixed with food especially with protein.
Try it, I think you will find a big difference but if you are taking sinemet without food perhaps you should try and change to something other than sinemet. It seems to work for me as my "on" time lasts longer now.
It's not perfect but any improvement is better than none.
I am waiting to be called to do a trial on a new medication called opicapone
Which as I understand it prolongs the "on" time and I believe only one tablet a day is required, I will post HU when or if I am put on it and what the outcome is.
Let us know how you get on,
Best wishes
Moorhen2002
Hi schatsie,
You have to run some experiments, slowly increasing the dose until you find the c/l amount that relieves your symptoms.
Once you have done that, you need to see how long that dose lasts.
This amount of time will roughly be your dosing interval.
Trim this time as necessary to ensure there is no off-time when you have consecutive doses (i.e., there is a slight overlapping of doses).
Note that breaking tablets in half can be a useful technique for making smaller dosage adjustments, and there are many possible combinations of IR and CR.
For example, I share a recent dosing plan I have used in case it is somehow helpful:
Dose @ Interval CR/IR LED
1 6:00 AM 2.5 hrs 1.0/1.5 290
2 8:30 AM 3.5 hrs 1.5/0.0 210
3 12:00 PM 3.5 hrs 1.5/0.0 210
4 3:30 PM 3.5 hrs 1.5/0.0 210
7:00 PM
The CR/IR column lists the number of <CR tablets>/<IR tablets>.
I use CR, since it lasts longer, and I use IR when I want a faster response.
Note that everyone is different, and it is unlikely that this plan will be right for you (e.g., if your disease is less advanced you would need less c/l, and vice versa).
Hi, I'm 71 and I have been noticing that CL /ER is not working as well either. So what I did is to take it more often I was taking it 4 times a day and now I'm taking it 5 times a day, so by doing that I have increased my dosage by one more serving per day. Also what I've been doing is when I am most active which is in the middle of a day I have increased my dosage by 1/2 so I'm taking one and a half pill. I am taking one dose in the night, I kind of wake up at the right time. So, to start with I would not increase the total amount of C / L that you are taking. However I would redistribute the pills to have them five times per day. You could give it a couple days and see how it goes. And, if you have not tried thiamine HCL I definitely would. That has made a tremendous difference in my movement and nothing else has done that. If you getting no relief from four times a day I would go to five times a day and since you're taking many pills you have a option of dividing them into smaller portion per 24 hours. let me know if you get any kind of a relief from changing your schedule. One more thing,, I would skip one of the IR before going to bed and just stick to the ER. if you do get relief from taking the medication more often maybe you could even try to reduce the amount. I would make up a schedule that is evenly spaced and definitely take something during the night or you're going to be playing catch-up during the day. All together I'm taking 5 and 1/2 pills a day C / R Carbidopa levodopa 25 / 100 each pill.
I wish I could give you a sensible response, but I’ve never been that thoughtful about taking medication. I, too, have periods of tremor in my left hand between medication dosages. What I generally do is take a dopamine tablet when the tremor hits. I continue to do this dance in the wake of the focused ultrasound treatment I received 2 1/2 weeks ago. I have been asking the surgeons what to expect, and since I don’t know whether I’m in the treatment or placebo arm of the clinical trial that I’m participating in, I can’t really get a straight answer from the surgeons. My overall feeling of wellness has increased as a result of the procedure, and this includes a posture that is more erect, more fluid movement of my legs and hips, and a clearer, more powerful voice.
I have the same problem. It helps me to take it on an empty stomach.
Dry mouth,swollen tongue and burning lips!!!!!
C/L induced dyskinesia - severe wrist pain 
C/l dosage 
Is this a side effect of c/l or what?
