Too little or too much L/C? => A tentative summary

[evenshoshan]

Too little or too much L/C? => A tentative summary

Dear fellow CPs, thank you again for your kind and very useful input. I feel that I owe it to you all, and to myself, to summarize my take-aways. I take full responsibility for any errors / mis-understandings. Yours truly, evenshoshan.

Take-away #1: It’s important to separate the IRs (Immediate Release) from the ERs (Extended Releases). At the outset, when asking the title question, all I knew about my PD medication was that it was L/C and of a certain dosage. Nothing else!

Now, I know that my current L/C medication is IR, and a lot more than that. For instance, dosage can be adjusted upwards or downwards. And that we the PWP can play an active role in it.

Take-away #2: Starting on L/C medication can be delayed in time, for some persons by a couple of years. Thus, PD diagnosis doesn’t necessarily equate to immediate L/C medication. It’s a decision that should be taken / discussed or debated with one’s Parkinson’s neurologist. Also the notion that “the (early) use of Levodopa hastened the onset of Levodopa induced dyskinesia has now been disproven.”

Take-away #3: Once initiated over a certain period, L/C medication shouldn’t be turned off just on the grounds that “none is better than some”. One should listen to her/his symptoms and act accordingly.

Take-away #4: “Start low, increase slowly” (increase only if necessary). “If u need it, take it.” “A number of variables affect this, including sleep, stress levels etc…”

Take-away #5: “Spreading out doses with IR by taking smaller doses more frequently ensures a more even absorption.” “This can further reduce the likelihood of side effects”.

Take-away #6: “If you can get the lower dose you might be better to take half as much twice as often.” “The same dose but closer together”. For example, if I go for the L/C 100 mg / 50 mg then I have the option of taking two half doses of L/C 50 mg / 25 mg closer together. It can be far more dynamical and appropriate that what I believed.

Take-away #7: “It might be good to take a 1/2 L/C tablet first thing in the morning to get a base amount going then to add the other 1/4s from then on.” It was also reported a similar option of “front loading the meds…and tapering off towards evening.”

Take-away #8: In regards to overdosing, L/C overdosing can be detected by dyskinesia or a specific type of dystonia. “The most common motor symptom of too much levodopa is dyskinesia – involuntary muscle contractions, oftentimes rhythmic but slower than tremor.” Overdosing dystonia is “distinguishable from Parkinson’s dystonia because it occurs at the peak of levodopa levels rather than the low.”

Take-away #9: An additional source of information to explore / play with / turn to for assistance are open-source AI tools.

Take-away #10: A couple of us PWP and Carers share the frustration that some of our medical interlocutors don’t always have the time / patience to listen to us or openly discuss / debate treatment options with us.

[Charaf1959]

Merci. Bonne synthèse, pratique

[Smokeypurple]

Great summary thanks.

It might be a good place to add that there is an inhalable form of Levadopa called Inbrija for emergency off times down the line.

And of course the Produopa pump - grateful to those such asblazyb generously sharing their journey.

[evenshoshan in reply to Smokeypurple]

Smokeypurple, thank you for bringing it to my attention.

[Esperanto]

👍 Even more important than your doctors, caregivers, and AI is Self Intelligence (SI). This overview of various contributions exemplifies that! Critically assessing your symptoms, medication, and side effects, gathering knowledge, seeking feedback, and continuing to develop yourself is unfortunately not possible for everyone, but it is incredibly important.

I also want to highlight the insights provided by John Church in his informative contribution, "Journey with Parkinson's," which discusses the pharmacokinetics of Immediate Release (IR) and Controlled Release (CR) formulations:

journeywithparkinsons.com/w...

Farooqji discussed this in 2020 on HU in "Difference between C/L Controlled Release (CR) and Immediate release”:

healthunlocked.com/cure-par...

Additionally, there is an indispensable tool available from JohntPM on HU featuring a graph showing levodopa levels throughout the day, including on/off states and dyskinesia:

healthunlocked.com/cure-par...

[park_bear in reply to Esperanto]

The first link did not work for me. The second link goes to a brief post which has a link that did not work for me either. Link to my discussion of IR versus ER:

healthunlocked.com/cure-par...

[evenshoshan]

Esperanto, thank you for your kind words.

Totally agree with you on SI, I struggle with it every day…

I will certainly look into the works you mention.

[MPPD]

hi evenshosham, on point 1 above why is it that : It’s important to separate the IRs (Immediate Release) from the ERs (Extended Releases)?

[evenshoshan in reply to MPPD]

Hello MPPD,

Good question !

I'm new on the L/C learning curve and honestly I can't tell you if one is better than the other, and if so, how, when and why?

When I wrote to separate one from another, I meant learning that apart from dosage, all L/C is not equal. Previously, I didn't know that, but now I do.

I didn't even know that my own L/C medication is IR!

Yes, I'm angry with myself. It made me realise how passive I've been to date in regards to my prescriptive medication.

The more information I can have, the more tools I'll have at hand to become an informed actor in my own situation. And I think that that's the 'raison d'être' of this CP forum.