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Is Anyone Experiencing Rough Wearing Off Periods While On Levadopa/carbidop? What Do You Do To Help During This Time?

A MyParkinsonsTeam Member asked a question 💭
Chipman, New Brunswick
February 8, 2019
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A MyParkinsonsTeam Member

oh yes OFF PERIODS!!! I have had freaking P.D. for 18 years!! I have been taking Madopar for 3 years after taking Sinemet for 12 years (the first 3 years I took nothing). I have built a resistance to the [[treatment:levodopa/carbidopa:55d534f51fcaa397470006dd]] and levodopa/ benserazide, so I am very accustom to off periods! They are torturous!! I am looking hard for a med to see me thru these off times! The latest on the market is XADAGO. It’s USD $ 920 for a month’s supply!!! So far I can’t find the generic SAFINAMIDE, which will be cheaper.
The other new med on the market is INBRIJA, an inhaler for off periods. I have checked Walgreens and Costco pharmacies, I can not find it yet, but my dr. says it will be very expensive also!! There is a lot of research going on right now, but the FDA is tough to give approval.

The process of approval is much faster and easier in Europe! So I am checking there for these 2 new meds!! I’ll let you all know what I find out, and if anyone finds them for a reasonable price, let us know!!
Just for the record, I also take Requip 4mg, 3 times a day, Amandadine 100mg 2 times a day,
Prestig 50 once a day, Aprazlam .05 2 times a day
Regards to all!!

February 15, 2019
A MyParkinsonsTeam Member

Yes this happens to me everyday. I work retail so I'm always on my feet. I take my meds 4 times a day, so when these weak moments happen I take my meds and keep moving till they kick in. There's not much else you can do. Good luck

February 8, 2019
A MyParkinsonsTeam Member

I'm on a carbidopa/levodopa ER (extended release) - taken 4 x day. I am careful about meals - take med 1/2 hour before eating or 1 hour after eating as directed by my neurologist. If I did the 1 hour before and 2 hours after I don't think I would be able to eat any protein at all during the day. I have very little down time. Perhaps the extended release version would be of help to you.

February 10, 2019 (edited)
A MyParkinsonsTeam Member

Meds should be taken 1 hour before a meal or 2 hours after a meal. Avoid protein as your brain cannot tell the difference of protein from meds or protein from food therefore will not make enough dopamine to be beneficial. It needs the protein from the meds only to be of benefit.

February 9, 2019
A MyParkinsonsTeam Member

Do you make sure not to eat 1 hour before and 1 hour after taking the medication? Food especially proteins effect the efficency of the medication.

February 8, 2019

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