Less sinemet more often

[Kt088]

Has anyone tried to take less sinemet more often throughout the day? I have been experimenting with this for a few months now and it seems to keep me on a more even playing field. So, Rather than take one sinemet three times a day, I take a half a sinemet six times a day. I was getting side effects from the medication that bothered me taking a whole pill and doing it this way seems to decrease that. Anyone else tried this? Let me know how it has been for you. Thanks

[Beverly2017]

Yes, for me by taking half a pill and then taking the other half an hour or so later, I get more "on" time. I also use macuna inbetween. At 9 am I take 1 macuna capsule, then at 10 30 half a sinamet, at 12:00, the other half, at 1:30 I take 1 macuna 3:30 half a sinamet etc. It seems to do the trick.

[rescuema in reply to Beverly2017]

How do you administer your eating schedule along with gastric emptying? Are you protein sensitive?

[Kt088 in reply to rescuema]

I hold off on most of my protein until my evening meal.

[rescuema in reply to Kt088]

Makes sense. If not battling weight loss, intermittent fasting is also a good route since it increases NAD+ production, which directly improve mitochondrial functions and reduce inflammation.

[17Hillview in reply to Beverly2017]

I am now doing something similar. I believe that the Carbidopa in the Sinimet helps with the absorption of the mucuna.

[johntPM]

Yes, I've done this, but I topped out at a maximum of 5 doses of levodopa per day. (15 years post diagnosis, my whole daily regimen for PD is 5 x 75 mg Stalevo, 1 mg rasagiline, 8 mg ropinirole, 1 sachet of macrogel.) I suspect that preferences will vary from person to person and what matters most is to experiment.

My present approach is to use "dynamic dosing". That is, I don't take my doses at fixed times, but rather, I take the doses as required (or, to be more precise, just before the previous dose wears off).

[PDGal4 in reply to johntPM]

How do you know when you are just before the last dose wears off? If I wait for that feeling, I experience off time between the worn off dose and waiting for the new one to kick in.

[johntPM in reply to PDGal4]

The first thing that I notice that I'll soon be going "off" is a slight tremor and a little bradykinesia (slow movement). This is more apparent if I'm doing some activities than others. For instance, the decline in performance is big if I'm washing up, but non-existent if I'm walking.

One decision that I find difficult to deal with is if I have a delayed or lost dose (possibly due to slow gastric emptying or protein in the meal).

I limit the number of Stalevo pills that I take in any one day to 6 (against a prescribed number of 5). The other days I take either 4 or 5.

As I said before, I suspect that these signs vary from person to person.

If you want to experiment, you may wish to do the side-to-side tap test every 10 minutes, starting 30 minutes before a dose (to get a baseline) and continuing during the duration of a dose.

parkinsonsmeasurement.org/t...

This gives a graph like that on the home page of my web-site.

[PDGal4 in reply to johntPM]

Thank you I will take a look at this. Like everyone else, I am trying to adapt to the inconsistencies of meds effectiveness. One day my dosages are perfect, very little ofttimes, no real dyskinesia, and evenness of effect. Another, the meds kick in too effectively, I'm flying high then suddenly off. I look for patterns of sleep, food, activity, mood. Protein is a major issue for me, but other than that have not found anything consistent. Appreciate your input. (8.5 years post diagnosis)

[HarveyChua]

Are you still able to get Sinemet? what dosage do you take?

[Kt088 in reply to HarveyChua]

If this question is for me, then, yes and lmy pills are the 25/100

[ddmagee1]

Yes, I have done that-using half pills, every few hours, it does seem to help, so that side effects aren’t a problem, for me.

[Vik38]

What time do you take your final doses? Is it necessary to keep your body "topped up" over night? My hwp didn't take his 11pm tab ast night and actually slept like a baby 👶😁. Just wondering if it's better to keep an even level of dopa in the body (by taking at regular intervals). The doc seemed to suggest that but at first there were no tabs between 6pm and 6 am !!

[Kt088 in reply to Vik38]

I have had Parkinson’s for almost 20 years and i’ve never taken my last pill of the day past 3 or 4 o’clock And I wake up just fine and have no problems overnight

[Juliegrace in reply to Kt088]

If you’re still taking three pills a day after 20 years, I would say you are very lucky to be progressing slowly.

[Buckholt]

I was thinking of trying this but thought about having the first dose as a full 100 mg dose to get me over the therapeutic hurdle, then top up after that. Is your first 50 mg enough to get you going?

[Kt088 in reply to Buckholt]

It is for me but everyone is different

[Juliegrace in reply to Buckholt]

I take my first dose of a whole 10/100 pill and then fiddle with my subsequent doses according to how I feel and what I have to do.

[AmyLindy in reply to Juliegrace]

Ditto, and as long as my bowels are working, and I’m working out a lot, my Rx needs are reduced.

Some days I don’t start my first dose until noon 🕛 ... then again, I’m early on in this process (Dx 2017).

[Godiv]

I wanted to do that too, but for some reason my doctor didn’t want me to. I also wanted to try different dosages depending on needs for the day But the doctor said that would cause problems down the road. I should’ve asked him to explain that. That was not the best Dr. patient conversation, since I didn’t ask any questions.

[laglag in reply to Godiv]

Hi. PwP's sometimes know more about dosing than the doctors but you need to also listen to your doctor because too much medicine can cause dyskinesia or make it worse. So before you experiment too much, check with your doctor. I know that from experience.

[Godiv in reply to laglag]

Thank you, lag lag. You are so right and that’s good advice. I guess the temptation is to do our own thing and we get impatient too.

[Astra7 in reply to Godiv]

Same here. Neurologist very determined that I take a higher dose less often.

[Godiv in reply to Astra7]

Yes some of them are definitely against it for sure.

[magicmags]

am having horrible off's with breathlessness before next dose. just feel can't breathe and other symptoms, racing heart, shaky as in shivering, not parky shakes, feeling dire...as if I'm going to die. on high doses of sinnemet. I'd be afraid to 'experiment' with dose as these offs awful. I've increased my 8pm dose by half , seems to help. my worst times are from 7pm at night to 12md next day. morning meds take ages to kick in. overnight am on 2 x CR 25/100 and at 5am take one sinnemet 25/100 to get me through early morning till 8am meds. just stated azilect 1mg to see it it helps. does anyone else have breathlessness as an 'off' symptom?

[jrg54321 in reply to magicmags]

That breathlessness happens to me sometimes but not always. Something to do with my diaphragm muscles.

[PDGal4 in reply to magicmags]

Yes I have had that too. Scary. I ended up in the ER the first time. I attribute as well to diaphragm muscles and the more panicky you get, the worse the breathlessness gets. My symptoms seem to vary and come and go, so for now this has not been an issue.

[Astra7 in reply to magicmags]

All the time. I think it also makes me anxious which makes it worse.

I take my next dose at the first sign of running out - finger flicking or toe curling.

[SGlass]

I take half a Sinemet (12.5/50) every 2 hours 10 times a day. Low blood pressure with a whole every 4 hours drove me to this. It really smoothed it out.

[Thbl]

I was diagnosed with early onset PD at age 38. I’m turning 46 this year. I experience a variety of side effects including ICD(impulse control disorder). To combat this my doctor decreased my C/L 25/250 by half a pill on my morning dose only for a total of 4 doses a day finished off with a CR 50/200 at 8 pm.

Due to my ICD I decided to reduce each dose by half a pill but add a 5th dose to get me “leveled out” till my CR pill at 8pm. So I take my pills at 6am, 8am, 11am, 2pm, 5pm and CR at 8. I also take Amantadine 100 w each C/L dose. The ICD has relaxed but now dealing with sleep apnea really bad.

So long way of answering your question but I say yes reducing by a half or adding an extra dose overall may help .

[Juliegrace in reply to Thbl]

Do you take a dopamine agonist, also?

[AmmieM]

I’m guessing that you can’t do this on the continuous release ones?

[hercules957]

The art is to find the therapeutic zone to relieve the symptoms and stay in the zone as much as possible. We must be careful not to go through the zone and enter the dyskinesia threshold. Too much Sinemet too fast leads to dyskinesia in most folks. Sinemet can take 30-45 minutes to be absorbed fully, this takes your blood plasma level to the highest concentration in your blood, then the metabolism starts to break it down. 90 minutes after max plasma level your concentration of levodopa is reduced by 50% There is an interesting chart to play with here: parkinsonsmeasurement.org/t...

We probably have different metabolism rates to absorb and dissolve levodopa but the guidelines suggested help with developing a plan. After tweaking it, I now take Sinemet 100/10mg, (not 100/25)as follows : 8:00 1.5 tab, 10:30 1.5 tab, 14:00 1.5 tab, 17:30 1.5 tab, 23:45 1 tab, and one more tab between 4:00 and 5:00 when I get up to pee. That is 8 tabs a day mostly every 3.5 hrs and my symptoms are all controlled. I take also 100 mg intramuscular B1 once a week and 5 mg Selegiline 2x/d.

[Jonathanadam]

What side effects were you getting?

[Sapeye2020]

My doseage regimjne, after suffering from splitting headaches , from taking IR Synamet (brand name and generic) , 1 each of 200/50 CR and 100/25 CR generic on a 4.5hr spacing. If start to feel a LOW session coming on I pop 1 100/25 if doing a swim, or 2 if cutting firewood. NEURO approved . Last doses are just when going to shut eyes and when I wake to relieve my bladder.

Dx in 2013 starteing dose was 2 x 100/25 IR @ 6 hrs , then to 300/75 IR ( 100/25 + 200/50) Then headaches started..

[Giovi1960]

Hi, same for me. I should be taking 1 25/100 4 times a day and 1 50/200 before bedtime. As I am really concern about the side effects on the long run, I decided (on my own) to try half 25/100 three times a day and half 50/200 before bedtime. So far it is working fine, less leg spasms and sleeping a bit better. I am thinking of not taking the one before bed. I also take 1 rasageline 5 mg midmorning.

[Pelley]

a year ago while visiting my (resident) neurologist his closing statement sent me down this same path. "You've been dealing with PD for over 17 years and your DBS for almost 8." "You certainly can tell what your body needs". "You're every bit your own neuro when it comes to questions like this."

From that time on I've listened to my body more. I was taking 3 (100/25's) every four hours including a 3AM dose and experiencing wearing off. I switched to 2 every 2 hours except the 3AM thing (which my body without fail tells me what time it is) with satisfactory results.

I have my 2nd battery replacement procedure scheduled and a new neurologist (resident) to train coming up next month. This will be my 7th resident. Thinking they should put me on the payroll soon.......

I go in with the attitude to try to prove I DON'T have PD and make them alway prove me wrong. Guess I'll try the same this time. The last appointment put notations of PD(ism) and suggested MSA testing. Guess it is what it is and I'll deal with it then.

[UMass67]

I’m experimenting with this. I only take two sinemet per day, and my neurologist said, “don’t forget you can cut these in half if it works better for you “. So I’m taking one before breakfast, a half at noon, and a half before dinner. This keeps my hand steady through the afternoon.

[rajbhai]

HI,I HAVE been suffering with this disease from past 20years at present i am taking sinmet100mg and 50mg every 4hours plus vitamin b complex xtra strong half every 5hrs symetryl 50mg some times i am ok that i can do everything a healthy person does but sometimes tremors so bad i cant stand sometimes freeze cant move my right leg some times i fall , hope they might find cure for this horrible disease take artine it stops tremors instantly but this medicine is not available in nz but can buy in australia fiji,

[munchkin77]

I was diagnosed 17 years ago and am starting to experience dyskinesia. Am also experimenting with taking less Sinemet more often which does seem to be helping. I took part in the GDNF clinical trial which ended four years ago and am still reaping the benefits from that - I reduced my medication and no longer experience the severe dystonia that used to cripple me. The trouble is, despite the majority of participants having improved quality of life the scientists failed to prove it so the trial failed. So there is a way forward for Parkinson's - GDNF or Neurotrophic Factors, it works. The Participant Group are still campaigning for further research. Its slow progress, but we are making waves. No participant feedback was used when deciding on the fate of the trial and many issues in the trial design led to the unexpected result. When science start to realise that the best judge of whether a treatment is working is the person taking it, we may move on and actually find a cure.

[Parkie- in reply to munchkin77]

Hello Munchkin

"took part in the GDNF clinical trial which ended four years ago and am still reaping the benefits from that"

I thought they stopped supplying the GDNF to the trial participants. My understanding was that the participants were left with the hardware implanted in their skull, but no more.

[aatje]

And how you deal with the meals?

[SFD7]

Parkinson’s strongly affects my digestive system, and so does Levodopa. Specifically, taking too much immediate release Sinemet at once (e.g., a whole tablet) gives me severe diarrhea, while too little leaves me with severe constipation. So I take 3 Extended Release tablets (one every eight hours) per 24-hour day, and then supplement this with a 1/4 tablet of immediate release a half hour prior to a meal. And sometimes I take an additional 1/4 an hour after a meal if I’m bloated or otherwise digestively distressed.

[Trixiedee]

I did that when the dyskinesia got too much. I still only take 50mg Sinemet at a time. It worked for me for a few years and then the dyskinesia and off times got too much and I was lucky enough to have Focused Ultrasound.