Hi everyone, I’m having an odd experience with my sinemet and wondering if this is not uncommon or is it something else. I’m 68 and was diagnosed 15 years ago which is when I started taking the sinemet, 1 tablet every 4 hours round the clock. As time went on I was able to decrease that dosage to every 4 hours just during the daytime hours, not evenings and that remained the same for the last 15 years. About a year ago my doctor told me to take 2 tabs every 4 hours throughout the day because I was having so much trouble with my symptoms until now. I had been given the medication from the same manufacturer for all those years until just a few months ago when they filled my prescription through a different manufacturer. The dosage was the same so I didn’t worry much about it but a few weeks ago I was just over it, over the cracked out way I’d feel after taking a dose, tired of the dyskinesia and other things that I tried something different. I can go up until about 9 am before needing that first dose anyway but that’s not new, I’ve been this way for years but taking a whole tablet, let alone 2 tablets still made me so uncomfortable so I tried taking a half a tablet and then a half an hour later the other half and I was pleasantly surprised. I didn’t get the cracked out feeling or anything. Every 3 hours I would do the same thing and so far so good. I just don’t feel so bad anymore. Don’t get me wrong, the Parkinson’s is still there but now I just feel like it’s a victory in a sense, a mini miracle of sorts for me as I was drowning in the medications side affects. Is this anything anyone else has been through or is this just a short lived experience and I’ll eventually have to return to the higher dose? I’m confused by this, happy but confused. Thanks for the comments. God bless.
Having an odd experience with my sinemet - Cure Parkinson's
Having an odd experience with my sinemet
Hi Mimi. My neuro says I have interdose dyskinesia driven by the fluctuations in concentration levels caused by taking sinemet tablets periodically. I find that halving the tablet and halving the interval between them creates a smoother ride (providing I react to the reminders on my iWatch!) so less dyskinesia. What you are doing sounds to me like a good alternative but check with your own neuro.
From ChatGPT:
It's understandable why you're feeling both happy and confused by this experience! It's definitely something worth exploring and discussing with your doctor. While I can't provide medical advice, I can offer some insights based on the information you've shared and general knowledge about Parkinson's disease and Sinemet.
Here are some potential reasons why splitting your Sinemet dose might be making a difference for you:
More Stable Blood Levels: Sinemet works by providing levodopa, which is converted to dopamine in the brain. Taking a full dose can lead to a rapid spike in levodopa levels, followed by a drop-off as the medication is metabolized. This fluctuation can contribute to dyskinesia (involuntary movements) when levels are high and "off" periods when levels are low. By taking smaller, more frequent doses, you might be achieving more stable and consistent levodopa levels in your bloodstream, thus reducing the peaks that trigger dyskinesia and preventing the troughs that lead to symptom worsening.
Individual Absorption and Metabolism: Everyone's body processes medications slightly differently. It's possible that your body is now absorbing and metabolizing the Sinemet from the new manufacturer in a way that makes the larger doses less tolerable. Splitting the dose might allow for better and more gradual absorption.
Placebo Effect: While less likely to be the sole reason, the positive feeling and sense of control you've gained from this new method could be contributing to an overall improvement in how you perceive your symptoms and side effects.
Potential for Different Formulation (Even with Same Dosage): Even if the dosage is the same, different manufacturers can use slightly different inactive ingredients or have variations in how the tablet is formulated to release the medication. This could potentially affect the rate and extent of absorption.
Regarding your questions:
Is this anything anyone else has been through? Yes, it's not uncommon for individuals with Parkinson's to find that adjusting the timing and frequency of their medications can significantly impact their symptoms and side effects. Some people find that smaller, more frequent doses are beneficial for managing fluctuations.
Is this just a short-lived experience and I’ll eventually have to return to the higher dose? It's difficult to say for sure. It's possible that this new regimen will continue to work well for you. However, Parkinson's is a progressive condition, and your medication needs may change over time. It's also possible that your body might eventually adapt to this new way of taking the medication.
Crucial Next Steps:
Contact Your Neurologist Immediately: It is essential that you inform your neurologist about this change in how you are taking your medication and the positive results you are experiencing. Do not make significant changes to your medication regimen without their guidance.
Explain Your Experience in Detail: Describe exactly what you were feeling before, what you tried, and how you feel now. Be specific about the reduction in side effects and the improved symptom control.
Discuss the Change in Manufacturer: Mention that the change in manufacturer coincided with the increased dosage and the subsequent issues you experienced. This information could be relevant.
Follow Your Doctor's Advice: Your neurologist can help determine if this new method is safe and appropriate for you in the long term. They may want to monitor you closely or make further adjustments to your treatment plan.
In conclusion, while it's wonderful that you've found a way to manage your medication with fewer side effects, it's crucial to involve your neurologist in this process. They can help you understand why this might be working and ensure your treatment plan remains safe and effective as your Parkinson's progresses.
It sounds like you've shown great initiative in trying to find a better way to manage your symptoms. Keep communicating openly with your medical team.
These are pleasant generalities, but in general large language model chatbots are not a valid source of health information.
See my post: Using "AI" for research yields wrong answers. Often. Here: tinyurl.com/uzaa9wkn
Thanks for your feedback. I read each response that I post and correct errors, as needed. I also cross-reference deeply technical topics with other sources (like the examples you cited), as needed. Please be more specific and point out particular errors in my reply. Also, did you run your accuracy experiment with other AI LLMs or just Google Gemini?
The inaccuracy of the "turnto" AI for health information is also discussed in detail in my linked post, as well as reporting on ChatGPT, the LLaMA series developed by Meta, and BLOOM.
Additional inaccuracies cited in my post here: healthunlocked.com/cure-par...
Wow, what a link. Wilderness Voice strikes again
As "ultracrepidarianism" is possibly the most wide spread syndrom in our public discourse, I would have thought I would know that word, but no.
I don’t have experience of that word so here is its meaning.
“Ultracrepidarianism, derived from the Latin phrase "ne ultra crepidam" (meaning "beyond the shoe"), describes the habit of giving opinions or advice on matters outside of one's knowledge or expertise”😅
Mimi, t's called "less pulsatile dosing" and it suits me very well as I can't take more than a 50mg tab of levadopa. I'll try to locate an article I read on less pulsatile dosing, but you could try Googling it .
pmc.ncbi.nlm.nih.gov/articl...
That's a useful article. I do something similar but there's more variation in my routine
Thank you for finding this article - this was most enlightening - and confirmed a suspicion of mine I had on the golf course last summer…I was taking my dosage (or partial) every 2 hours while playing vs. every 4, hours and I found it almost felt as though I did not have PD. No ‘off period’, no ‘shaky leg syndrome’ etc - of course, a degree of relaxation likely helped too, but I am going to try it in ‘day to day life‘ and see what works. Currently not taking any Entacapone….
It is a reality the minimal doses usage its something I observed long time and I am practicing on me with incredible results .I don’t have a perfect explanation but it may be like in Homeopathic Pharmacy and seeing the effect of an medicine homeopathic on me was my inspiration . But I don’t denied the power of placebo and the intensity of fighting for healing I saw only in Parkinson’s Warriors !
thanks . If you don’t mind sharing, what is your daily regimen with your medication .
hi, yes I think this is very common. My husband has had the same experience. Normal doses are too much. He takes the 50/12.5 madopar tablet as the 100 is too much
Increasing Sinemet and Nourianz 
My Sinemet CR plus IR protocol 
Side effect of Sinemet
Sinemet dose intervals 
