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Who Has Been Using Sinemet (carbodopa/levodopa) For More Than Five Years? Dyskinesias? Please Mention Dose And Other Pd Meds.

A MyParkinsonsTeam Member asked a question 💭
Brooklyn, NY
July 23, 2016
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A MyParkinsonsTeam Member

Dyskinesia - read the book Good By Parkinson’s Hello Life . It tells you how to overcome Dyskinesia with Excercise . Fantastic 😃

February 19, 2023
A MyParkinsonsTeam Member

My husband is 75 years old and has PD for 15 years. He was mostly on Senemet 25/50 one or two pills 4x a day with selegine 1x per day. In 2018 a dr switched him to Rytary 195 2 pills 4x day and Rasagline 1mg 1x per day. At about the same time he added on Amantadine. About 1 year and a half ago I got him off the Amantadine. It was causing Impulse Control Behavior: for my husband it was sex and he was like a pervert and dirty old man. The Drs said "Oh no it's not the amantadine! Amantidine is used to curb ICB's! But I knew different b/c I was living with him. It was hell getting him off that drug but no more ICB. Recently I started to notice that after his mid day pill of Rytary he was nasty and aggressive. If he didn't get what he wanted when he wanted he went nuts. He was paranoid about his wallet and money. He would scream and yell at the aide, and sometimes leave the house alone and go walking alone. We reduced the Rytary to 195 + 95, 4x per day. Still it would happen. The dr. added on Seroquel. 25 mg. I would give him that as needed ususally 2 in the morning, one midday maybe 2 at night. That could make him like a zombie, as well as lose balance more, fall, etc. One morning he went off on me after his morning med. We had a good morning routine with showering and getting dressed before I went to work. So I knew the Rytary was causing it. That morning gave him 3 seroquel and let the aide know he was off. It was like the flood gates were open and he couldn't stop. Even when I got home he was a bit calmer and still nasty. I took him to the emergency room to be evaluated. (That again was hell). Now he is back on Senemet, 50/100 3x per day and he doesn't need the Seroquel also called Quetiapine. He is pleasant and nice, although sometimes it is a little more difficult to move. But sometimes he walks so well he doen't know what to do with himself. Bottom line: there is no cure for PD and drugs have side effects. Everybody is different and you have to advocate for your loved one or yourself.

February 4, 2023
A MyParkinsonsTeam Member

Teresa, I love the comment and understand why you were excited to use it, lol.
I know, I am also shocked by the slow progression of PD. I'm almost in shock when a symptom worsens or a new symptom presents itself. Somedays I actually question whether I have PD or not. Then I catch myself going down that rabbit whole and just thank God for giving me this time. I do occasionally get angry though when I have to pay a handyman $150/hour to change the light bulbs in my garage because PD does not allow me to get on a ladder. There seems to be no end to the surprises PD gives us.
Maria

September 18, 2023
A MyParkinsonsTeam Member

Have been on carbodopalevodopa since 2010 when I was diagnosed. IR -- 2pills 3x day; CR -- 2 at 7 am, 1.5 at noon and 1.5 at 5pm. Am pretty careful to space them out and keep eating times at suggested intervals. Am not always good at starting at 7, so must rearrange times for other doses, keeping eating at regular intervals. (1 hr after pills and 2.5 hrs before pills).. also take Azilect (1mg) w sinemet (25-100). for PD. Prescribed in 2010 w Sinemet. Take other meds for other ills (seizures, Depression, IBS, GERD, and hyperparathyroidism +vitamins &CBD). Whatever, it seems to be working as there's been little progression in 11 years). Hugs to all

November 30, 2021
A MyParkinsonsTeam Member

Beware of what you take I was on at least 20 pills a day and ended up in the hospital for 11 days with hallucinations. I know Parkinson's is a guessing game with the meds. But come on now you put your trust in your doctor. they couldnt see this coming. I am just frustrated.

February 27, 2020

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