[soccertese]

http://jnnp.bmj.com/content/52/supplement/29.full.pdf

first description of the C/L controlled release mechanism i've found, might explain why it's effectiveness can be variable, it is with me.

"the capsule remains floating on the top of the stomach contents after a standard meal for 6-12 hours" ???? they describe MADOPAR CR but i assume SINEMET CR is similar except contains benserazide instead of carbidopa.

and they were discussing IV continuous l-dopa back in 1989!! they also were getting good results from an apomorphine pump.

[johnt]

soccertese has made a good find.

I'm of the opinion that, given the glacial progress being made in the introduction of new treatments, anyone who has had PD for more than 5 years is likely to gain more from optimising their (unique to them) response to existing therapies than banking on a breakthrough getting to them in time to make a difference to their prognosis. Given this, I recommend that PwP read this paper.

In the paper Lees gives many tips: some well-known, such as not taking levodopa drugs with protein containing foods; some less well-known, such as:
"If the start-up time in the morning is slow following the first daily dose of levodopa it is useful to instruct the patient to grind up or dissolve his first daily dose and imbibe it in a sweetened drink. This can improve the speed of response by up to thirty minutes." [Note: do not grind up controlled release medications.]

I always thought that the decreasing response to levodopa over the years as the disease progresses was due to the decrease in the brain's ability to store dopamine. However, Lees writes:
"progressive reduction in the storage capacity of surviving nigrostriatal dopamine terminals is not a critical factor."

Finally, it is interesting to note that this paper was written in 1989 and they were talking about the levodopa pump then.

John

[made it up]

Originally Posted by johnt

soccertese has made a good find.

I'm of the opinion that, given the glacial progress being made in the introduction of new treatments, anyone who has had PD for more than 5 years is likely to gain more from optimising their (unique to them) response to existing therapies than banking on a breakthrough getting to them in time to make a difference to their prognosis. Given this, I recommend that PwP read this paper.

In the paper Lees gives many tips: some well-known, such as not taking levodopa drugs with protein containing foods; some less well-known, such as:
"If the start-up time in the morning is slow following the first daily dose of levodopa it is useful to instruct the patient to grind up or dissolve his first daily dose and imbibe it in a sweetened drink. This can improve the speed of response by up to thirty minutes." [Note: do not grind up controlled release medications.]

I always thought that the decreasing response to levodopa over the years as the disease progresses was due to the decrease in the brain's ability to store dopamine. However, Lees writes:
"progressive reduction in the storage capacity of surviving nigrostriatal dopamine terminals is not a critical factor."

Finally, it is interesting to note that this paper was written in 1989 and they were talking about the levodopa pump then.

John

Hi Soccertese and John,
I think timing isn't discussed enough nor is diet related issues.
When I was first diagnosed with P.D. in '94 there was talk in the local Parkinsons community about 'Sinemet Fizz' which was a standard Sinemet/s crushed and mixed with ginger beer and a swig of that taken every I think hour or so which sounded a bit haphazard plus I didn't imagine all that ginger beer helping waistlines or oral health much!
At the time I was smug and on no anti parkinson drugs and imagined I'd tough it out for many yrs to come but of course we all know what happens next right?
Anyway knowing what I know now it probably isn't such a bad thing and perhaps worth a go for some?
I personally haven't done it but I guess its a bit like madopar rapid or liquid sine met.
Might work for some of us so thought I'd mention it.

[ol'cs]

from that article couldn't describe the feelings that we get when we suffer an "on off", any better!

[JoClay]

Would it make any difference if I took the crushed C/L when my "off" time usually comes when my second dose is due? I would not be taking this on an empty stomach, since I would have already had breakfast. Would that change the results? Thanks.

[soccertese]

Originally Posted by JoClay

Would it make any difference if I took the crushed C/L when my "off" time usually comes when my second dose is due? I would not be taking this on an empty stomach, since I would have already had breakfast. Would that change the results? Thanks.

which C/L are you taking, 25/100? if you crushed it and added to orange juice it might get into your system a little faster. dissolving C/L in liquid with some vitamin C in it to keep the C/L from oxidizing was suggested years ago for those individuals that had to take it hourly and needed to take less than 1/2 pill/dose, tough to split a 25/100 into qtrs.
you shouldn't be going off after your first dose, are you discussing this with your neuro?
i do go off but i usually know why, ate too much protein, no will power at times. and i'm irrationally resisting an agonist to my drug regime.