October 11, 2019 at 12:48 pm #15727JulianHParticipant
I know that each PD case is different and requires different medicinal treatment, but I’d like to do a survey about our experiences anyway. Did anyone experience dyskinesia or hallucinations with long-term Sinemet use? If so, at how many tablets/day? How long had you been on Sinemet? Did the side-effects disappear if you dropped your dosage?
By the way, I’d like to recommend a good book on PD. The author is at Mayo Clinic It is somewhat technical but it is organized well such that you can read just specific chapters.
“The New Parkinson’s Disease Treatment Book, Partnering with Your Doctor to get the most from your meds”, J. Eric Ahlskog, PhD, MD, Second Edition, (c) 2015 532pp. I got it on Amazon.
October 11, 2019 at 2:04 pm #15728
julian, thanks so much for sharing that book.
i have been on sinemet or carbidopa/levodopa for about 2 years. still trying to get dose right. i am on 25/100 3 tabs per day. also just started neupro 3mg patch. i feel horrible on and off the drug. since sinemet is off market since May 2019 i have been experiencing some dyskinesia about 2 hours after a dose on the generic, no hallucinations.
October 15, 2019 at 10:49 am #15777Lou HevlyParticipant
I have been on sinemet for about 3 years, 25/100 3 tabs per day. No negative side effects.
October 18, 2019 at 7:05 am #15846
I just began taking the generic version of Sinemet manufactured by Actavis. My MDS provided me with the following titration instructions:
- Week one: Half a tablet by mouth one hour prior to breakfast
- Week two: Half a tablet by mouth one hour prior to breakfast and half a tablet by mouth one hour prior to supper
- Week three: One tablet by mouth one hour prior to breakfast and half a tablet by mouth one hour prior to supper
- Week four and on: One tablet by mouth one hour prior to breakfast and one tablet by mouth one hour prior to supper
That seems really conservative but I am not in a rush.
I am in the middle of week two and so far so good. I had side effects that outweighed the benefits for just about every other PD med including amantadine, artane, and all three non-ergot dopamine agonists (mirapex, requip, neupro).
I second your recommendation for that book. It is a really good one.
October 18, 2019 at 7:14 am #15848
Mike, that sounds like a conservative approach which i think is good since the meds can have bad side effects.
DO you also wait some time after you take your dose before eating, especially eating proteins? Sometimes I get nausea and have found sniffing peppermint oil helps me.
October 18, 2019 at 1:13 pm #15859
I make sure I do not eat anything at least one hour after taking the dose. I do drink coffee with a little bit of non-dairy creamer which I don’t believe has very much protein if any at all. I am working on converting to black coffee. Thanks for the tips in case I get nausea. So far so good.
October 18, 2019 at 1:17 pm #15860
mike, have you tried any of the nut milks for your coffee; eg. almond milk, oat milk etc.?
October 29, 2019 at 11:34 pm #16047
Does anyone else take carbidopa-levodopa only twice daily as my neurologist prescribed? It seems as if the more typical regimen is three times daily. I have been taking one 25/100 tab at 8 AM and one 25/100 tab at 4 PM per her instructions and fasting at least 2 hours prior and 1 hour after the doses. She said if I don’t need it at night there’s no reason for an evening dose.
I find that the 8 AM dose is very ineffective despite fasting before and after the dose. The 4 PM dose helps a bit. I am theorizing the 8 AM dose is not as effective since it’s been 16 hours since my last dose.
What times do you typically take your carbidopa-levodopa doses?
October 30, 2019 at 3:24 am #16048Lou HevlyParticipant
The usual dosage is 3 x daily; my neurologist said that this is to keep the level of dopamine in the blood as constant as possible.
October 30, 2019 at 10:27 am #16050
i second what Lou says, my neuro says the same thing. also, my naturopathic doctor recommended taking a vitamin C (like Emergen-C) to help improve absorption of my nutrients and meds.
October 30, 2019 at 10:57 pm #16060RobertParticipant
Good question and book recommendation
I was diagnosed a year ago and immediately started Sinemet last November. So coming up on one year.I started at 1 and 1/2 Sinemet 25/100 3 times a day. Over the past year I have raised and lowered and then significantly raised the sinemet dosage and timing to get to the level that seems works for me.
I am currently on 2 25/100 5 times a day plus sinemet entended release 50/200 at bedtime. Plus if I awake in the middle of the night I am to take 2 25/100 to get back to sleep. Gotta keep that tank full! The goal is get to the sinemet dosage to provide me with the level that provides for a consistant help throughout the day. Obviously some need more than others.
I have not had any dyskinesia or hallucination side effects from the sinemet.
I have trouble moving and walking if I am late with a dose or skip a dose. I have stiff and slow PD. Never had much of a tremor.
As Jean M says so often – this is a very individualized disease with very individualized treatments. It is very interesting to see how everyone is different in their PD presentation, progression and treatments.
I agree that the Ahlborg book is a very good reference for PD. My quickly higher dosage of sinemet is actually something I found that he discusses in the book as not a totally unusual occurrence and not something to be afraid of if it works. The right dose is the dose that works for you.
October 31, 2019 at 6:47 am #16061
robert, i recommend the book as well. I borrowed it from my library, but i may buy a copy for reference.
as much as i hate taking drugs, i will continue to pursue finding my ‘cocktail’ to improve my quality of life
October 31, 2019 at 4:17 pm #16087George KapetanakisParticipant
Before my DBS I was at one and a half pills three times a day. My life was miserable and I had Dystonia, Dyskinesia and a list of other ailments due to PD. In the beginning, Sinemet was really beneficial to my symptoms. In the end, my On-Time was much worse than My Off-Time. If that makes sense.
After my DBS I was down to one pill three times a day. A fifty percent reduction. Still six months after my second operation I came down with much worse Dyskinesia that was so bad that I had to be hospitalized for three days. I was falling all the time and I could not stop my right arm from moving. My neurologist was at a loss. My DBS up to that point was working fine. Even though my right side was much more successful than my left side. What to do now.
She played with the settings a little and I dropped Sinemet altogether.
It’s been over eight months since then and I have to report that “No Sinemet” is the best medicine or supplement. For me anyway. Because we know that PD is different for everyone.
Like most of you, I do experiment with different supplements. I do take on a daily basis vitamin D, Omega, B-Complex, Magnesium and if with the right food a glass of wine or beer.
I still have PD and it is progressing but I feel so much better than two years ago. DBS, although not perfect, really worked out good for me.
October 31, 2019 at 5:16 pm #16093
george, what a horrible experience. this disease continues to surprise me in how it impacts us. i am glad you are doing better
October 31, 2019 at 6:00 pm #16099Laura MahonyParticipant
I have been taking one 25/100mg C/L tablet 3 times a day for 18 months. I experience dyskinesia and noticed it begins about an hour after I take a dose. I cut the tablets in half and take them 6 times a day (annoying, but doable) and notice very little dyskinesia. I realize that as I need increased dosages I won’t be able to avoid dyskinesia, but for now it works.
October 31, 2019 at 6:40 pm #16101
hi laura, i too notice that i experience dyskinesia (so uncomfortable) about 2 hours after a dose, something that started happening when i was forced to go to generic after brand name sinemet was pulled from the market by merck. i have read that dyskinesia can be caused by too much C/L so i am working with my doc on how best to take my C/L
October 31, 2019 at 6:28 pm #16100George KapetanakisParticipant
Thank you Jean.
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