WHAT DO YOU USE FOR "OFF" PERIODS? HELP PLEASE!

[OREOLU]

Hi Fellow parkies/caregivers,

If you are still on regular generic Sinemet( direct release), what do you use during your off periods?What works for you,suppliments or otherwise? Thanks for your support.

[Hidden]

High dose thiamine hcl.

[OREOLU in reply to Hidden]

Hi RoyProp.

Thanks for your input.

[cb6403 in reply to Hidden]

Roy what is high dose currently am talking 500 mg

[Hidden in reply to cb6403]

Up to four grams daily divided into two equal doses

[cb6403 in reply to Hidden]

One tablets is 500mg how many tablets make up 4 grams

[Hidden in reply to cb6403]

4 at breakfast plus 4 at lunch

[cb6403 in reply to Hidden]

Thanks going to try it

[Hidden in reply to cb6403]

I choke on tablets. Recommend capsules.

[johntPM]

An "off" period comes about because of a shortage of levodopa. You should discuss with your doctor an increase of dose or an increase in the frequency of the dose.

[park_bear in reply to johntPM]

Or using a time release version instead of immediate release

[OREOLU in reply to park_bear]

Hi park-bear,

I am considering the time release,rytary but it is expensive. Any cheaper one out there,that you are aware off?

[park_bear in reply to OREOLU]

Generic carbidopa/levodopa ER is probably the cheapest time release version.

[OREOLU in reply to park_bear]

Thanks park-bear.

[cb6403 in reply to OREOLU]

I'm on Rytary and every 3 hours a have an off with terrible shaking. Rytary does come with off period

[nedster in reply to cb6403]

Rytary has both fast release and time release carbi/levo. Seems like you could get the same thing taking regular c/l with extended release c/l at a lower cost

[OREOLU in reply to nedster]

Hi nedster,I don't know why my Doctor insisted on me getting Rytary through a Patient Assistance Program,when he could just switch me to Sinemet CR,which is cheaper,from direct release.Could it be that Rytary is better than Sinemet CR.

[nedster in reply to OREOLU]

I'm not a doctor, but mine prescribed sinemet er and regular sinemet to experiment with dosages. Rytary worked no better for me and I have one of the foremost PD doctor in the Houston medical center. Rytary is too expensive and I don't know what incentive your doctor might have in prescribing it.

[Hidden in reply to nedster]

I am having success with IR day and 2 hrs after last dose one ER

[cb6403 in reply to nedster]

Going to be talking to my Dr tomorrow

[OREOLU in reply to cb6403]

Hi cb6403,

that's scarry,terrible shaking "off" periods,you said.Did you tell your doctor about this?Any remedy ?

[cb6403 in reply to OREOLU]

Yes its expensive but covered by my insurance my out of pocket is $70 for each 90 days refill compared to $10 copay for 90 days Sinemet

[OREOLU in reply to johntPM]

Hi johntPM,

Sure I will talk to my doctor as well.Thanks.

[Aleagles]

I can take levodopa either two hourly at 50mg, thee hourly at 75mg or four hourly at 100mg. What time works best will vary depending on how much socialising or relaxing I am doing and how well I have slept

[OREOLU in reply to Aleagles]

Hi Aleagles,

I do appreciate your input.

[Medications]

My brother have taking both carb/lev./ER and 25/100. But the side effects are really bad he get legs cramps and toes cramps at least 4 times a day.

[17Hillview]

A cup of grapefruit juice once in the morning 30mins before my first sinimet/mucuna dose, extends my on time and therefore reduces my off. Does not work for everyone, as GFJ reacts differently for everyone ...including very negatively so read more and thread carefully. But if it works for you, it may give you more on time. May be worth exploring.

[OREOLU in reply to 17Hillview]

Hi 17 Hillwiew,

What negative effects other than,dyskinesia and dystonia ?

[17Hillview in reply to OREOLU]

I have both. My dystonia is addressed completely with Mucuna. I get dystonia immediately upon waking up in the morning, and it goes away completely 30 mins after my first Mucuna dose.

Wrt my dyskinesia, I get it only if I exceed my current dose of Mucuna. I found my current dose by trial and error. When I did exceed my optimum dose then I would experience dyskinesia when the dose begins to take effect approx 30 mins after I take it, and it lasts for about 10 to 15 minutes. The dyskinesia then comes on again once the dose begins to wear off approx 3.5 hrs after I take it. With my exact dose, no dyskinesia and about 4 hrs of on time, i.e. with the grapefruit juice. Note that these timings vary plus or minus on any given day.

Other than these, I do experience a bit of nausea at times when the dose is taking effect.

I hope this helps you in some way.

Rgds and good luck.

[OREOLU in reply to 17Hillview]

Hi 17Hillview.

Thanks for your reply.

[cb6403 in reply to 17Hillview]

Just curious how many Macuna make up your Dosage. Currently am taking one daily any suggestion

[17Hillview in reply to cb6403]

4 doses per day each at 400mg 100% powder, first dose is taken 30 mins after gfj. Suggest that to take in at least 4 divided doses to spread during the day to even-out off times. Ideally a higher number of divided doses may be better as that now tends towards a controlled release equivalent, but more becomes impractical for me. Good luck.

[Somic67 in reply to 17Hillview]

Hi, i think i'm going to give grapefruit juice a try.

do you use a commercial product or you juice at home by yourself?

how much grapefruit juice do you drink and how often ?

may thanks in advance for any reply

[17Hillview in reply to Somic67]

I drink both with equal success. If fresh or concentrated, I dilute and sweeten accordingly.

I have 1 cup (as in std measurement) 30 mins before my first med dose. No more for the day.

Best of luck.

[Somic67 in reply to 17Hillview]

many (1.000 ) thanks for your reply

and you improve your on time by approx 30 min (in my understanding)

is it correct?

[17Hillview in reply to Somic67]

About an hour, plus or minus depending on the amount of food in my stomach when I take the meds. The emptier the longer, but also the higher likelihood of slight nausea in my case.

[Peplaugal]

I am on levodopa & have needed to change the dosing schedule in order to avoid the “off periods.” Aleages described what has worked best in an earlier post. Rather than taking all of the meds at once, I space them out over a couple of hours and it works much better. If I take too much levodopa at once, I also feel sedated and vomit. Bet of luck to you!

[OREOLU in reply to Peplaugal]

Hi Peplaugal,

thanks for your input.

[PDGal4]

Dr. Mischley suggests taking C/L (all forms including Rytary) with an acid--I generally squeeze half a lemon or orange into a full glass of water--for better absorption. You can also drink Airborne. Grapefruit is an acid, so may be why it works and can't say if it works better than other acidic juices. BTW my doctor recommends taking with a full glass of water to push levodopa through the stomach faster for absorption in small intestine.

[pdpatient in reply to PDGal4]

Great information, PDGal. I am going to try it the next time I take my meds.