Hi all, I hope you’re doing well. In the circumstances...
So LDopa - why shouldn’t you simply take the next dose when you start to feel the last dose wearing off?
It seems we’re supposed to take them four hours apart - but I can feel the effects start to wear off a little over three hours. And bearing in mind it generally takes 45mins for a pill to take effect I’ve started just popping a pill a bit early.
What’s the risk?
Thanks
Marc
I take my c/l 10/100 every two hours during the day, sometimes a little sooner or sometimes a bit further apart. I have discussed this with my doctor and he is fine with it. I do not take any meds at night.
I do the same: I take a pill in time to kick-in before the last one finishes. For me, this often means taking a dose later than scheduled. And over the day, I may often take fewer doses than expected, but rarely more.
You have to be careful to properly deal with the lost or delayed dose. By this I mean the dose that doesn't kick in at the normal time. Sometimes these never arrive, a lost dose. Sometimes they arrive late, a delayed dose.
If you're frequently going "off" early, this suggests that taking a higher or more frequent dose is worth considering.
In my opinion, a downside to this approach is the difficulty in ensuring compliance, so it is not suitable for some people.
I think the less L/C in your body the better is .
I'm not suggesting taking more L/C in general. I am suggesting that you take it when it is needed (taking into account the time it takes to become effective) and not taking it when it is not needed. Taking fixed doses at fixed times can't be optimal, because the amount of levodopa that gets absorbed varies from time to time and the amount of dopamine (that levodopa gets changed into) that is used up also varies from time to time. Fixed dosing is like putting a litre of petrol (gasoline, US) into a car at 0600, 1000, 1400 and 1800 regardless of whether you've driven anywhere in the meantime. Fixed dosing, though, has the advantage of being easier to be compliant. So, for some PwP, following a fixed regimen may be better.
I have tried telling my neuro and a NP that every 4 hours is too long. Every 3 hours best for me. They will not listen!
Ignore him. Someone who sees you every 6 mtha is not an expert on what you need
I was doing this but foolishly told my neuro who told me I should be taking more less often to reach a certain saturation. He even drew me a little graph before charging me $200 and telling me under no circumstances to change meds without asking and to come back in 6 weeks!
So instead of 1/4 a madapor 4 times a day I’m now taking half 3 times a day. So, overall more meds. There is less off time - I’m no longer bringing forward the next dose - but my body really wants to sway around about 45 mins after taking it. I’m not convinced there is any improvement overall at all.
Your neuro is not giving you enough credit. You know your body best. Six weeks to check on such a low amount of meds seems excessive (and possibly greedy). I've seen several neurologists and for that sort of follow up, a phone call or an email would suffice. Doesn't Australia have national healthcare?
hi julie yes we have a great health system here but we have very greedy people here the last one i went 2 cost me 400 dollars and he told me nothing so i find a lot of good information in here in health unlocked as for me i take 1 madopar one 3 times a day 200/50 one at 9.30 am one at 4.pm and one 9 pm.regards john.
Who do you see?
well the last 3 i went 2 see all hit me for 400 dollars i better not give names but one works in the hospital in leederville one in perth hes a really bad person.hes not far from leederville.regards john.
Mine (RS) is in subi. He’s meant to be good but I find him very rigid and quite moody!
yes i find most of them very arragant people i prefere not going to see any of then like you said a load of tossers.
We have a great public health care system, but also private health if we choose - can be faster for non urgent care. I see my neuro as a private patient so pay but get some back from the government. If I saw him as a public patient it would be cheaper but not as convenient. It’s a good system - if you have more money you pay more.
That said, I think $200 for a 5 minute telling off was a bit steep. He’s a bit of a tosser actually!!
Rigged system!
Marc. Have you considered Mucuna? Mine enables me to not take much Madopar at all.
Hi Jeeves what brand of mucuna are u taking and how much per dose
But isn’t mucuna merely the active natural ‘bean’ component in Madopar (c/l)?
In other words you’re still taking the dopamine but in a different form - so naturally you’d take less of the prescription form but may have increased your overall amount?
I’m unsure about this Marc. However I do believe that the mucuna version is natural as opposed to synthetic. Reports indicate that it has far less chance of causing dyskinesia than pharmaceuticals. Actually I think I remember hearing that it’s the carbidopa that causes much of this unpleasant side effect? The green tea is a carbidopa replacement.
Jeeves.....What brand and what strength of mucuna do you use? Which green tea extract do you use? Thank you for sharing!
Carbidopa does not cause dyskinesia. Mucuna can cause dyskinesia the same as c/l. It is the whole bean powder, not highly concentrated mucuna extract that MAY have some beneficial properties.
You are correct in that it's just one form of levodopa replacing another.
I have a friend with PD who has had it for 19 years and has only taken Mucuna. She has no dyskinesia. QED!
Hello, does Mucuna make you sleep badly? I take a dose in the morning, if I take another in the afternoon to avoid taking Madopar I don’t sleep well
Many thanks
I take Rytary 2 x 95 mg. 3 x day and 4th dose close to bedtime. I supplement daytime dosages with 1/2 C/L as needed between doses, which is usually 3 x day. Higher dosages of Rytary make me feel high and still I experience being off. This seems to work for me. If I let myself remain off for too long, throws my whole day off. Hard to get back to good functioning. My neurologist is okay with this.
Anyone experience a wearing off cough/shortness of breath?
Suggestions for timing food and medications?
Starting C/L immediate release 
24 hour sinemet. Why not?
Knowledge is Power: understanding our medications.
