Sinemet dosagePosted by julianh on October 11, 2019 at 12:48 pm
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.
Deleted UserDeleted UserOctober 11, 2019 at 2:04 pm
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.
MemberOctober 15, 2019 at 10:49 am
I have been on sinemet for about 3 years, 25/100 3 tabs per day. No negative side effects.
MemberOctober 18, 2019 at 7:05 am
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.
Deleted UserDeleted UserOctober 18, 2019 at 7:14 am
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.
MemberOctober 18, 2019 at 1:13 pm
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.
Deleted UserDeleted UserOctober 18, 2019 at 1:17 pm
mike, have you tried any of the nut milks for your coffee; eg. almond milk, oat milk etc.?
MemberOctober 18, 2019 at 1:33 pm
I do drink nondairy milks as I try to move away from dairy given the research. But, they all have protein. :-/
Deleted UserDeleted UserOctober 18, 2019 at 1:39 pm
i am trying to go plant based myself. it certainly isnt easy!
MemberOctober 29, 2019 at 11:34 pm
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?
MemberOctober 30, 2019 at 3:24 am
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.
Deleted UserDeleted UserOctober 30, 2019 at 10:27 am
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.
MemberOctober 30, 2019 at 10:57 pm
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.
MemberApril 18, 2023 at 7:44 pm
I am scheduled to start taking the 50/200 CR at night along with my 5 daily doses of 2 tablets (25/100). How many 50/200 are you taking before bed and what’s your daytime schedule?
My current daily schedule has been 2 tablets 25/100 every 4 hours. How many hours should I get from the 50/200 tablet?
I am aware my results may vary.
MemberMay 2, 2023 at 10:42 am
Hi Gerald, It all depends on the person. My husband takes 2.5 x 50/200 4 x daily and 1 x 25/100 4 times daily. He goes between taking these at 4 hour to 6 hour intervals depending on how much energy or “Spoons’ (The Spoon Theory) of energy he has exerted through exercise or meeting up with people during the day.
If he leaves it until a 6 hour gap then he is normally quite ‘off’ as has probably forgotten to take them being in the middle of exercise or whatever. It makes such a difference what a person is doing, the hourglass gets drained, even though when we asked a Neurologist years ago about this, they said no… it doesn’t work like that. We absolutely do think it works like that, and told him he was wrong.
MemberMay 2, 2023 at 10:44 am
Nice post Robert….. ditto in my thnking…. it’s what works for you.
Deleted UserDeleted UserOctober 31, 2019 at 6:47 am
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
MemberOctober 31, 2019 at 4:17 pm
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.
Deleted UserDeleted UserOctober 31, 2019 at 5:16 pm
george, what a horrible experience. this disease continues to surprise me in how it impacts us. i am glad you are doing better
MemberMay 2, 2023 at 10:38 am
WOW George, that’s amazing, to be able to drop Sinemet altogether. That’s where I feel there is a lack for my husband – decent programming or settings changes on the DBS.
I am so pleased for you that you have been able to do that with the meds. I am not sure how old you are or how long you have had PD but would you share at all please.
I can imagine my husband would love to take less, because when we have titrated down on the Sinemet his dyskinesias have always lessened, but unfortunately the on/offs have become worse so he gradually has had to increase again – progression probably.
Anyway – happy for you !!
MemberOctober 31, 2019 at 6:00 pm
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.
Deleted UserDeleted UserOctober 31, 2019 at 6:40 pm
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
MemberMay 2, 2023 at 10:26 am
That’s really interesting Laura…. cutting in half and spreading out more. My husband (61 yrs) has had PD a long time, over 25 years now and Young Onset, he has been on 2 types of Brand Sinemet since 2006 and now he is seemingly getting to the peak of how much he can take. Just over 2000mg per day…. The DBS implant for him in 2012 has not stopped an increase in medication needed unfortunately afterwards and so we are not sure what will be the thing to do if the dyskins get out of control. I really like this thought of spreading out during the day as he has heavy on/offs as well even with a helper of Comtan. Thank you x
MemberOctober 31, 2019 at 6:28 pm
Thank you Jean.
MemberApril 20, 2023 at 9:10 pm
I began Sinemet about two years ago, 25/100, one pill, three times daily … In March, I discussed dosage change with my doc … I was starting to have a mild off episode after about 4.5 hours … so he left the decision of adjusting the dosage to me … I eventually settled on 1.5 pills, three times a day. Working fine. I have never had any side effects from the drug, either the initial dose or the revised one … I can’t say I understand why, but, obviously, I’m glad this is the case …
Thanks for the book recommendation … I plan on buying it …
MemberApril 20, 2023 at 9:52 pm
I started sinemet 25/100 twelve years ago at 1 pill four times daily. Then it went to 1.5, then 2, then 2.5 four times a day and 1.5 when I go to bed — that’s 11.5 per day, about the max they will prescribe. I also take rasagiline, added 6 years ago and amantadine added 5 months ago. My neurologist say I should start preparing myself for DBS in a year or so.
For 13 years my symptoms have been well managed with meds and physical therapy but that is nearing the end and surgery is the next step.
MemberApril 21, 2023 at 9:38 am
Carbidopa can cause a Vit B6 deficiency, possibly contributing to dyskinesia. 1mg B6 for every mg of carbidopa taken. Talk with your doctor.
1 Lodosyn prescribing information: https://www.accessdata.fda.gov/drugsatfda_docs/label/2014/017830s014s016s017s018s019s030lbl.pdf
2 Rojo-Sebastián, A. et al. Vitamin B6 Deficiency in Patients With Parkinson Disease Treated With Levodopa/Carbidopa clinical Neuropharmacology Vol 43, Number 5, Sep/Oct 2020FDA
MemberApril 25, 2023 at 10:35 pm
I was reading all the different dosages everyone takes. I think my son takes too much. He takes 25/250 five times a day and 50/200 of the extended release at 10 PM. He was diagnosed a little over 6 years ago. I do a lot of research into early morning hours. I have come across so many different approaches. But here’s just one I thought was super interesting and won’t affect any meds or supplements you’re already on. Check out Joseph Christiano, ND. I’m going to be ordering a couple of his products for my son who has early-onset PD. God bless one & all. 💜
MemberMay 2, 2023 at 10:20 am
Hi Joanne, I’m not sure how old your son is, but my husband is Young Onset, had PD for over 25 years now, dx at 38 yrs. Once Young Onset always apparently. You haven’t mentioned how many of the mg your son takes 5 times per day… is it 1 x 25/250 and 1 x 50/200? As you say, we all do so much research and everyone is different to how they react and what they need. My husband takes 4 times per day – 2.5 x 50/200 pills and 1 x 25/100 pills also 4 times per day… That’s over 2000mg per day. For him it works and the Neuro says it is not that high. All comes down to tolerance I assume.
MemberApril 27, 2023 at 5:59 pm
What supplements are being recommended?
MemberApril 28, 2023 at 9:19 am
I also take 1.5 Sinemet per day. However, I still get the curling of the toes throughout the day. Not sure that’s normal. Thanks for the book recommendation. I only wish they had a book like that that was published less that 8 years ago. With Sinemet its slow and steady that wins the race. Concern is building up a tolerance too soon with the medication that at this time is the Gold Standard for people with PD.
Education is key, but just be careful about misinformation and snake oil salesmen.
MemberMay 4, 2023 at 2:58 pm
I’m a 71-year-old woman, diagnosed two years ago. Was immediately put on c/l, but within a few days my skin started peeling off in little strips, all over my body. The neurologist switched me to pramipexole, which I still take. I’m curious if anyone else has any kind of skin reaction to c/l.
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