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I went to neurologist with just an occasional slight tremors in the right hand and he immediately started levo and after looking up C/L side effects I'd like to try to get off of it and see if I can maintain with what I had before (Tremor of right hand) my neurologist told me how to wean off but offered no suggestions or warnings! If you read the list of side effects it will scare the life out of you,I'm wondering if anyone else has tried and what was the results?
Answer Summary
Members shared powerful personal experiences about what happens when carbidopa/levodopa (C/L) is stopped or missed, with many describing rapid... Read more
@A MyParkinsonsTeam Member, We try to order the next month's worth as early as possible to prevent any lapse.
Jim' forgot two of his doses yesterday and didn't realize until dinner time. He wondered why he felt so awful all day. When he took a dose, he got very sick to his stomach. I think he learned a lesson there.
Yes I saw online something similar and my neurologist has me weaning off over a three week period I'm on week 2 and have some occasional symptoms but all in all doing ok
@A MyParkinsonsTeam Member, (Parrt 2)
My new neurologist was fantastic, trying to suggest holistic supplements, but my system would not cooperate. Rytary is a 3-tier drug which apparently means it's only for the richest and/or oldest of the population. At 63, I was neither. The free samples only lasted so long. As soon as I convinced my insurance to grant prior authorization, it would be dropped. The first time that I suddenly didn't have Rytary was indescribable. I gave this illustration to my neurologist. He said that it was rather accurate. I related my health to a car (I must clarify these days, that to be a gas-powered car) with serious electric problems affecting multiple areas of its performance. Rytary was like having the car completely rewired. Dropping off suddenly was as if some vandal had ripped all the wires out. My brain went so dark, things went through my head that I couldn't tell my husband, and I tell @A MyParkinsonsTeam Member literally everything! I argued and begged with my insurance and changed plans when I could, but the results didn't vary much. I can't remember how many times I bounced off and back on Rytary, and I learned to ration what I had, but just like once a car has electric problems, it will never be quite right again, I could tell that bouncing off and back on Rytary was causing permanent damage to my brain. I turned 65 on July 7, 2024, and so I qualified for Medicare based on Bart's work history. By the end of June 2024, I was about 90% bedridden, and needed help with virtually everything, but I did manage to make arrangements to start Rytary again beginning on July 1st. By my birthday, I was feeling well enough to go to church. I'm still not back to doing as well as I was when I first tried Rytary, but I am so much better than I would be without it. Eventually it won't work anymore, and my neurologist has already adjusted the dosage so that I'm taking more than I was, and Dyskenesia (I think it's called) is a factor to which I must learn to deal with, but one thing I learned was that Carbodopa/Levadopa medicines are nothing with which we should be experimenting. PLEASE be in close contact with your doctors should you choose to stop taking it.
Never tried but if I am late taking a dose then I have an awful time until my dose starts working. My tremors are bad and I start to feel sort of nauseous.
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