''ON PERIOD"' OF SINEMET KEEP DECREASING LEADING TO FREQUENT OFF PERIODS.PLEASE HELP.

[OREOLU]

Hi Friends,

Please help with your experience in spacing sinemet doses closer due to sinemet on period now decreasing,pending when I switch to Rytary as per my MDS.My previous schedule was 2 tab 25/100mg, at 8:00am,12;noon,4:00pm, and 8;00pm and one at bed time to sleep as approved by MDS. This has worked real good for about 2 years until recently. I did a video conference with my MDS last week and he wants me to switch to rytary,but due to insurance coverage problem,I have not been able to get the drug.I then called the nurse yesterday,who gave an okay to space the drug closer.I do consume a lot of sinemet as per my phenotype. Kindly advise on spacing,should I go slow and gradual,like each spacing dose time done gradually everyday or every other day or all on the same day.I will like to use this new schedule of 8am,11am,,2pm, 5pm, 8pm all 2 tabs and one to sleep at 11pm bedtime . Kindly help ,because I started the new schedule today,and I noticed before the 2pm dose,my off period symptoms appeared 30mins earlier. Also I remember eating banana at 1:15pm.Could the banana have triiggered an earlier off period? If so how do you manage food with this close spacing,and what kind of food can you eat.It is getting really tough, I cannot call my doctor until weekday. Thanks for your usual support.

[jeffreyn]

You've not mentioned dyskinesia, so I'll assume that you are not experiencing dyskinesia.

This being the case, there is also the option to try increasing the dose size to, say, 2.25, keeping the dose times as they were (i.e. 8am, 12pm, 4pm, 8pm). Hopefully, your tablets are double scored, and you have a good pill cutter.

For me it is a matter of trial and error.

[jeffreyn in reply to jeffreyn]

You can minimize the hassle of dealing with quarters of a tablet by doing all the pill cutting at one time.

I use a multi-compartment pill container. Each evening I spend 5 minutes doing the pill cutting and the loading up of the pill container, ready for the next day.

[OREOLU in reply to jeffreyn]

Hi jeffreyn,

I really do appreciate your support. You people on this thread are very kind and thoughtful,you always come to the rescue when pwp cannot reach our nurses or doctors.God bless jeffreyn.

[OREOLU in reply to jeffreyn]

No dyskinesia,just wearing off motor fluctuations.

[Grumpy77]

"Also I remember eating banana at 1:15pm.Could the banana have triiggered an earlier off period? If so how do you manage food with this close spacing,and what kind of food can you eat"

It's easy to know if the banana you eat triggered an earlier off period. The next day don't eat banana and see if the off period returns back to normal, then the following day eat banana again and see if (or not) an earlier off period is triggered again. Within 3 to 4 days you will know if banana triggers and earlier off period or not. You can also try the same with other food..

So in this case also, like jeffreyn said experiment and also do trial and error

[OREOLU in reply to Grumpy77]

Hi Grumpy77,

You guys on this thread are very smart and supportive.You make me feel I am not alone,and one day,cure will be found in our lifetime,God's willing.Big thank you again.

[Hidden]

As jefferyn suggested, increasing you dose may be an option. Most people find that 2.5 tablets is the point of diminishing returns... And I suggest you may want to try this first (before reducing the inter-dose interval) assuming your doctor/nurse say it is ok...

So now, how to determine the inter-dose interval for any dose amount? Take your first dose of the day and then wait until you go off. Then round the time you go off down to the nearest half hour mark (add some time "margin" to deal with fluctuations). For example, if you go off after 3 hours and 42 minutes, then round down your inter-dose interval to 3.5 hours (gives 18 minutes of margin). The margin needed will vary from person to person and will be highly dependent on how discipline you are with your eating...

I think the 1:15 PM banana could have interfered with your 2:00 PM dose. I personally try to avoid any eating in the 60 minutes before a dose, and any protein eating 120 minutes before...

[OREOLU in reply to Hidden]

Hi Levod,

here you come again to my rescue.You guys do really calm pwp's nerves down with your knowledge. I thank you again Levod. God bless.

[OREOLU]

Lots of love to everyone on this thread who has been very supportive of my PD journey.

[Cjbro2000]

Hi, Oreolu. I’m taking 1.5 tablets 5X daily - every three hours, ideally 9am, 12 noon, 3pm, 6pm and 9pm. It seems to be working most the time. I really have to watch the timing between pills and meals tho because that can throw me off very quickly. I try to wait at least 1/2 hr. to hr. before eating after taking my meds (C/L 25/100). Just starting my day (and first dose) later than usual (due to insomnia) can throw the whole day off. But it usually works. My MDS gave me the option of taking two C/L 4X daily, but I’ve found that makes me too sleepy during the day. So it’s a delicate balancing act.

[OREOLU in reply to Cjbro2000]

Cjbro2000,

I am paying serious attention to food,it seems as parkinson progresses,any food can throw you off the '' off".It becomes more difficulty juggling food schedules with c/l dosing schedule,when you have to decrease the intervals.

[OREOLU in reply to OREOLU]

Thanks for your input Cjbro2000.LOL.

[marnegro]

Bananas are at the top list of food rich in B6, and it may decrease the effectiveness of levodopa, provided that the carbidopa component was added to the pill to bind and neutralize B 6 purposely to get more levodopa crossing the BBB and reaching the brain

[OREOLU in reply to marnegro]

Hi marnegro,

this I never knew before.Thanks for your input.

[MaryChristine]

Hi, Oreolu, I was told B6 can interfere with CL dose. I also was told protein interferes with CL absorption so I stop eating high protein foods 30-60 minutes before dose and for 90-120 minutes after dose. Experiment. Also, my insurance (Aetna Medicare Advantage) gave me an exception to their approved drug formulary for Rytary. Your doctor has to support her decision for you to take Rytary vs. Sinimet ER. My neurologist told them S-ER does not work as extended release.

I'm learning that I ( we ) each have to experiment with dosing and timing. Overdose equals bad. dyskinesia fo me; underdosing equals tremor, weakness and increased instability for me. But I also need to say that every day is a surprise...my state is not as predictable as it used to be. (Diagnosed 4 years ago.)

[OREOLU in reply to MaryChristine]

Hi Mary Christine,

I will pass your message to my doctor.This disease is full of surprise indeed.May God help us all.Thanks for support.

[MaryChristine in reply to OREOLU]

My dr (neuro) told me about dropping a C/L sinemet- ER pill (capsule?) Into a glass of water, and said it turns to gooey mush.

[OREOLU]

Hi Mary Christine,

What is your doctor implying by making you do this?I don't get it.

[Midnight6512]

Hi OREOLU, I am taking Stalevo 150 mg Levodopa @ 8A,11A, 2P, 5P & 8P and was still having off time.

Then I heard about Apokyn. It is an injection I give myself just under the skin with a tiny needle in less than 10 minutes I’m back on . The company that makes it has what they call The circle of care. They have Nurses all over the country that come to your home and to access, prepare and show you how to use the drug. I n my case The circle of care also pays for what the insurance won’t cover. Ask your doctor.