Dear All,
I was given the task of keeping a patient diary with a schedule of hours according to the symptoms that appear after taking levodopa.
Can someone from the forum give me a list of symptoms that include mild dyskinesia, severe dyskinesia and freezing of gait (FOG)?
Thank you very much and best regards.
Levodopa can also cause dystonia. To tell the difference between levodopa induced dystonia and Parkinson's dystonia one has to consider when the dystonia appears. If at peak levodopa levels it is levodopa-induced. If at low levodopa levels it is Parkinson's dystonia. Further discussion here: healthunlocked.com/cure-par...
Thank you for your reply. The highest peak dose is about 1-2 hours per intake?
That is about right, probably a bit shorter for immediate release and a bit longer for extended/controlled release. Plasma levels versus time here, plus there is a delay for getting through the blood-band barrier and being converted into dopamine: healthunlocked.com/cure-par...
The problems started exactly 2 hours after I drank the LC. My legs are rubbery and I feel the FOG more. Thanks again, I'll check out the link you provided.
Please help to explain what the abbreviation AUC means
mg.min ?
AUC = Area Under the Curve
That refers to the average plasma level of the medication times the duration (mathematically speaking it is the integral of the plasma level over time).
It is a measure of the total exposure of the body to the medication.
Because of this, levodopa remains in the body for a long time. That's the half-life of the drug? Did I understand correctly?
The half-life is the time taken for the plasma level of the medication to drop to 1/2 of its previous level.
Why is the AUC such a large number? I got a number of 14686 mg/min in one day? Why is AUC important? What does it show?
Per ChatGPT:
Levodopa is a medication commonly used to treat Parkinson's disease and its symptoms. While it can be highly effective in managing the motor symptoms of Parkinson's disease, it may also cause certain side effects. Here are some possible symptoms or side effects associated with taking levodopa:
Nausea and Vomiting: Levodopa can cause gastrointestinal side effects, including nausea and vomiting, especially when taken on an empty stomach.
Dizziness and Orthostatic Hypotension: Levodopa may cause changes in blood pressure, leading to dizziness upon standing (orthostatic hypotension).
Dyskinesia: One of the most common side effects of long-term levodopa use is dyskinesia, which involves involuntary, jerky movements of the arms, legs, or other body parts.
Hallucinations: Some individuals may experience hallucinations, which can involve seeing, hearing, or feeling things that are not real. These hallucinations are typically visual but can also be auditory or tactile.
Confusion or Cognitive Changes: Levodopa can sometimes cause confusion or cognitive changes, particularly in older adults or individuals with pre-existing cognitive impairment.
Insomnia or Sleep Disturbances: Levodopa may disrupt sleep patterns and cause insomnia or other sleep disturbances.
Anxiety or Agitation: Some individuals may experience increased anxiety or agitation while taking levodopa.
Changes in Mood or Behavior: Levodopa can sometimes lead to mood swings, irritability, or other changes in mood or behavior.
Orthostatic Hypotension: Levodopa may cause a sudden drop in blood pressure when moving from a lying or sitting position to a standing position, leading to dizziness or fainting.
Skin Changes: Levodopa can sometimes cause skin changes, such as rash or darkening of the skin, particularly in areas exposed to sunlight.
Dry Mouth: Levodopa may cause dry mouth or increased thirst.
Muscle Cramps or Twitching: Some individuals may experience muscle cramps or twitching as a side effect of levodopa.
It's important to note that not everyone will experience these side effects, and the severity and likelihood of side effects can vary depending on individual factors such as dosage, duration of treatment, and overall health. It's essential to discuss any concerns or symptoms with a healthcare professional, as they can provide guidance on managing side effects or adjusting treatment as needed.
Thanks Mechjack for the list of side effects.
Keeping a list is a recommendation from my neurologist.
My general understanding is that we have one list of side effects, and the duration of the side effect represents a mild and severe side effect (dyskinesia or dystonia). The most important thing is time after taking levodopa. If this happens 60-90 minutes after taking it, it is a symptom of levodopa. Am I right?
A nice greeting.
Per ChatGTP:
It sounds like you're referring to distinguishing between medication-related side effects like dyskinesia or dystonia and the therapeutic effects of levodopa.
Your understanding is generally correct. Tracking symptoms based on their timing relative to the last dose of levodopa can help distinguish between medication-related effects and the wearing-off phenomenon, where the therapeutic effects of levodopa diminish before the next dose is due. Dyskinesia, for example, often occurs when levodopa levels peak in the bloodstream, typically around 60-90 minutes after taking a dose.
Here's a breakdown:
Onset Time: Symptoms appearing within 60-90 minutes after taking levodopa are often indicative of the medication's peak effect. These could include dyskinesia, which are involuntary movements, or dystonia, which are sustained muscle contractions leading to abnormal postures.
Wearing-Off: Symptoms that occur as the medication's effects wear off but before the next dose, typically referred to as "wearing-off," can include a return of Parkinson's symptoms like tremor, rigidity, or bradykinesia (slowness of movement).
Dose-Related Side Effects: Some side effects, such as nausea or dizziness, may occur shortly after taking levodopa but are not necessarily indicative of its therapeutic effects or wearing-off.
Delayed Dyskinesia: It's also worth noting that some individuals may experience dyskinesia that appears later, beyond the typical peak window, as a result of cumulative medication effects.
Keeping track of these symptoms and their timing can be valuable for both patients and healthcare providers to optimize levodopa therapy and manage any related side effects effectively. Always consult with a neurologist or healthcare provider for personalized advice and management of Parkinson's disease symptoms and medication effects.
I find it rather odd that most of these symptoms that are quoted as "medication side effects", are often seen as PD symptoms. It's almost like the meds actually make the symptoms same or worse and just timed differently.
It's definitely possible for some people to experience what you are saying. My experience is that overall C/L helps me feel feel net better. This was not the case with agonists for me specifically. There are also different formulations as well as pumps that can help bring a net benefit. Tracking everything as we have discussed and working with an MDS is key to finding the best available answer. Also, it will change over time... The joy of PD 😀
Chatbots, which are referred to as "AI", are more like artificial imitation than artificial intelligence. They're not reliable sources of information and should not be used for that purpose: healthunlocked.com/cure-par...
Do with the information what you will. I would contend it is more reliable that any antidotal account for which there are an infinite amount of in this world.
hi@marfot59, coincidently, I am working on a journal for my mds. I take 2 rytary 145s at 7am,10am,2pm , 6pm , 9pm. Last dose was added cause I struggled moving around in bed. I need a hospital bed rail to get out of bed. I also take 1/2 tab of c/l 25/100 and tab of selegeline at 7 am and 10am. Doc is trying to determine if I have peak dose dyskinesia (too much c/l) or akathisia(not enough c/l). So I get to chose my poison, if akathisia, more c/l Or less c/l and dyskinesia. Fine mess we are in with this disease
Thanks for the reply. How long should you write in the diary? When is the peak dose in your case? After 1 hour? 2 hours?
I would suggesting writing down any symptoms or effects you notice and what time they happen relative to the last does regardless of when they happen.
That's what I thought. I took Sinemet 1/2 100/25 mg every 4 hours. The side effects started exactly after 2 hours: wobbly legs, bent spine, sticky leg (difficulty walking). The last dose at 5 pm had no effect and then I stopped taking it to at least get some sleep. Then I extended the intake interval to 5 hours and there was an improvement, and then the same scenario. The last dose had no effect. The neurologist suggested that I keep a diary, because the accompanying symptoms were always fatigue, a bent spine and a sticky leg. I can conclude that the last dose shows the exhaustion phase, as you wrote. Thanks for your suggestion.
doc has asked for 7 days of data, but may take 5 as it is so cumbersome to log properly, plus I am a bad patient, sometimes I miss an alarm and I am late with my dose. I have noticed that the afternoons are worse for my akathisia /dyskinesia. Apparently they can look very similar to each other
my husband is going on 10 years with PD and his afternoon “symptoms” have been Dyskensia, even after moving Sinemet and Rytary around with times. They were aggravating and did keep him from being active for about 1 1/2 hours. He’s been taking Amatandine to help. The center of the Dyskensia starts and stays in his neck, and upper cervical area. The whole body has been affected all this time. But he’s had vocal cord issues which are cured— which meant a different medication being added and because of the extra work on his voice- the extra medication for cough- the afternoon Dyskensia is now severe. “Everything seems awake in my body and Moving at lightning speed.” 2 hours, then he’s exhausted. Our Dr put it well “Parkinson’s is a very jealous disease. It wants all your attention all the time and when the mind is diverted, it reacts.”
Is it the medication and timing? Is it because the other medication is being weaned out of good body? Is it from the 3 months to go through the necessary steps to get his voice back and verify it took? Is it the years he’s had PD? Whatever it is, he’s living through it and I’m mad at “it” and doing daily prayer to combat these latest attacks.
May not have been help answering your question, but sometimes the lines get blurred.
Aside from this—- I don’t want his Dr to get tired of me reaching out and decide not to treat him.
This is a hard journey for sure.
Any experience is welcome. Thank you.
@Margot59, dont know what App you are talking about, i am journalling on a spreadsheet i developed, adapted from one put out by parkinson.org parkinson.org/sites/default...
I attached my spreadsheet, not sure if it will be readable. I am on day 3. I do notice my akathisia/dyskinesia tends to flare up when i have a long period of time with no activity. like PC work. I also have bouts of akathisia/dyskinesia in late afternoon, early evening. anxiety seems to kick it off also (eg, i couldn put on pierced earrings)
I like your table. Is it word or excel?
excel, i can send you the .xls file if you like, u can pvt msg me for it. i found the pdf on parkinson.org to bequite cumbersome and i needed something i could type data in (vs write, as my handwriting is no longer legible. thank u parkinson's
You are mainly tracking gait? Do they experience any muscle cramping? You could also look at sit to stand (how easy is it to rise from a chair). How long they can stand in one place without losing balance, arm swing, or facial mask to gage dosage timing.
Logical, smart and simple. Thanks for the answer.
I find Dr. Hadlocks research on this topic very interesting. I’m posting a couple of pages where she discusses research and theories on the subject. What makes it complicated at is that our response to one dose is often different then it will be too another dose. One big factor is the cumulative affect of the medications. The pages I’m posting showed the same patient with the same dose but on different days. I will post a couple more images if it’s interesting to you you can find her book for free online and read further(once upon a pill).
Thanks for the comment. You can, just give it.
Thiamine and dyskinesia 
Gait Freezing
5 years of Sinemet and Dyskinesia
CL and dyskinesia 
