TEN (10) years and what have you learned?

What have you learned in respect to carbidopa levodopa?

[laglag]

It's essential for making life with PD a little more livable.

[Nitro53 in reply to laglag]

👍🏻

[johntPM]

In the last 10 years I've improved my understanding of:

- The pharmacokinetics of C/L. If you don't know the meaning of TMAX, CMAX, THALF, AUC, you're missing out.

- The regimen is all important. With the great variety of drugs for PwP, some C/L based, some not, taken at different times and different doses, the overall situation is difficult to understand. The complexity can be reduced by taking into account the LED (levodopa equivalent dose).

- Rather than keeping to fixed doses at fixed times, I use dynamic dosing. With this method I take my next dose when I begin to feel my previous dose just starting to wane. This has the effect of smoothing the concentration of levodopa in the plasma. Fluctuations of levodopa levels are thought to be a factor leading to dyskinesia.

- Don't accept a poor quality of life sooner than is absolutely necessary. Many people make good progress by making small changes to their regimen.

- In a world where medical services are limited, if you are competent, you should be prepared to experiment. But, of course, BE CAREFUL.

John

[kevowpd in reply to johntPM]

You're a real asset to the PD community.

[Stephan12 in reply to johntPM]

" Rather than keeping to fixed doses at fixed times, I use dynamic dosing. With this method I take my next dose when I begin to feel my previous dose just starting to wane." I follow the same logic

[Hidden in reply to johntPM]

And I experiment

[ddmagee1]

With it, I look almost normal most of the time. Without it, I stiffen up, have lots of trouble walking, have a constant resting tremor, and clumsiness, caused by cogwheel rigidity, is very evident. I have falls, because of muscle spasms in feet, and loss of balance issues, without Sinemet. So, in other words, with Sinemet, I function reasonably well, much of the time. Without Sinemet, I have obvious problems, with getting around, and doing most things. It’s like the tin man in the “Wizard of Oz”, seemingly, at times. With oil, the tin man, can move arms, legs, and his body in a reasonable manner! Without oil, the tin man cannot hardly function! I feel like it’s the difference between night and day! With Sinemet, it is daytime. Without Sinemet, nighttime!

[DeanGreen]

I've been taking C/L for 13 years and I believe my "buffering capacity", i.e. my ability to store excess dopamine into protective vesicles (VMAT2) has been greatly reduced. Now, my "sleep benefit" has diminished and I'm more susceptible to certain foods affecting the pharmacokinetics of the drug. One thought I had was that all that extracellular dopamine was being oxidized into the nasty hydroxydopamine which works as an oxidizer and destroys these vesicles, allowing more hydroxydopamine to be formed to create more havoc. So the more you take the more you need to keep functioning, until eventually you just can't get enough without side effects. Just a thought among thousands of other useless thoughts!

[Hidden in reply to DeanGreen]

Say that again.

[Gioc in reply to DeanGreen]

A little bit of vitamin D will contain the thing..

[Tribselyov]

9 years in the game for me.

Don't you think that we get a dopamine boost of endogenous dopamine when we have a positive event (i.e. pleasant surprise). When the "usual" exogenous dose of medication is "boosted" by an endogenously-mediated surge.... dyskinesia may be precipitated......

At least, that is my observation

[amykp in reply to Tribselyov]

That's interesting! And I guess it makes sense!

[TheGimba]

Ten years ago my nurse friend told me that they have tried all kinds of drugs for PD but nothing has worked more effectively than Carbidopa/Levodopa. She was right. An exhaustive list of other meds caused more harm than good... Just our experience.