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Problems using extended release types of Carbidopa Levodopa.

Bailey_Texas profile image
16 Replies

I have used Rytary, extended release Carbidopa Levodopa, Entacapone (Comtan) with the same results. At first they help but after a week or so they start to fail. My on time becomes shorter and my off times get longer and harder with more pain and other side effects. Most nights i am plauged with restless leg, unable to sleep, uncontroled movements, unable to talk for periods of time and many other night time problems.

If i take just Carbidopa Levodopa i do 100% better. My nights are good and the days are great. Has anyone else had a similar problem.

Thanks

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Bailey_Texas
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16 Replies
Beckey profile image
Beckey

I take only sinemet yet I'm plagued with the exact symptoms you describe. The dystonia in my legs and feet is unbearable.

Bailey_Texas profile image
Bailey_Texas in reply to Beckey

Ropinirole 6 mg 24 hour extended release (I take 1 a day) (requip) helps with my legs and the night time movememts. With ou it my legs keep me up almost all night.

rhenry45 profile image
rhenry45 in reply to Beckey

you likely have a neuroma in your feet which is very common. See a podiatrist and have him kill the nerve in your feet that is responsible. Then the dystonia will go away in your feet completely. I had that problem and I did what I said and it is totally gone now

johntPM profile image
johntPM

Bailey-Texas,

Please let us know your drug regimen (drug, dose, time) and the times you eat for both situations (good and bad).

John

Bailey_Texas profile image
Bailey_Texas in reply to johntPM

Current dose 3 25/100 Carbidopa Levodopa every 4 hours 24/7. Ropinirole 6 mg 24 hour extended release (I take 1 a day) (requip). I am doing well on this dose. Some down time but nothing to complain about.

Old dose 1 Entacapone 200 mg and 3 25/100 Carbidopa Levodopa every 4 hours 24/7. Ropinirole 6 mg 24 hour extended release (I take 1 a day) (requip).

silvestrov profile image
silvestrov

Perhaps the combination of ME + CR will work better for you:

ncbi.nlm.nih.gov/pubmed/814...

Catlou profile image
Catlou in reply to silvestrov

this is what i was taking 1/2 of each. worked well but does wear off quicker than the rytary. isnt rytary coming out with a new version?

rhenry45 profile image
rhenry45 in reply to silvestrov

where do you get levodopa methyl ester ?

silvestrov profile image
silvestrov in reply to rhenry45

I do not know. I have read about this form of l-dopa but have never tried/needed to use it. I would ask your doctor for a prescription.

Hikoi profile image
Hikoi in reply to silvestrov

Silverstrov,

I find It interesting that most neuros I have met are not particularly keen on using CR levadopa. They think its timing is unreliable yet i have seen some people doing well on it. Do you know of any newer studies? I imagine we have learned quite a bit about levadopa tx over the last 20 years.

silvestrov profile image
silvestrov in reply to Hikoi

I have had several people contact me who are on CR and they had complaints about it. I have not researched current CR studies but I am of the opinion CR does need to be coupled with another form of L-dopa whether it be the methyl ester form, sinemet/madopar or Zandopa as derived from the mucuna pruriens plant.

As a randon shot in the dark I am coupling Sinemet CR with NCBI for an internet search and found the following study:

ncbi.nlm.nih.gov/pmc/articl...

There is a Sinemet CR sleep apnea study, which is also recent, but the rest are from the 1990's. Though there were no studies about fast walking and Sinemet CR.

johntPM profile image
johntPM in reply to silvestrov

Sinemet CR has a longer half-life than Sinemet, but its bioavailability is about 30% less [1]. (Note how old the reference is!) Having a longer half-life has the useful effect of smoothing out levodopa levels. But there is less control of when the levodopa gets out of the stomach and can do something useful..

Reference:

[1] "Pharmacokinetics and bioavailability of Sinemet CR: a summary of human studies."

Yeh KC1, August TF, Bush DF, Lasseter KC, Musson DG, Schwartz S, Smith ME, Titus DC.

Neurology 1989

ncbi.nlm.nih.gov/pubmed/268...

John

etterus profile image
etterus

Even after 2.5 years of DBS success I was taking 25/100 c-l dopa every 2 hours. I'm now talking 3 23.75/95 Rytary every 4 hours. My dystonia is controlled much better.... even when off it's not nearly as threatening as it used to be. I still need to supplement with an occasional 25/100 due to off periods.

johntPM profile image
johntPM

Bailey-Texas,

Thanks for the extra details (though Rytary is not mentioned in the latest post).

Your regimen has a very high levodopa equivalent daily dose (LEDD). But, I gather from your previous posts that this has worked for you.

Regimen old dose:

C/L: 6 x 3 x 100 = 1800mg LED

Entacapone: 6 x 1 x 200 = 600mg LED (gets about a third extra from the C/L)

Ropinirole XL: 1 x 1 x 6 = 120mg LED (ratio about 20:1)

LEDD = 2520mg

Regimen current dose:

C/L: 6 x 3 x 100 = 1800mg LED

Ropinirole XL: 1 x 1 x 6 = 120mg LED (ratio about 20:1)

LEDD = 1920mg

You mention "uncontrolled movements" on the old regimen (= dyskinesia = LID?). You may have ended this by lowering your LEDD.

If a doctor is available, you should follow their advice. If not, I advise that when you change your regimen that you do it in small steps.

John

Catlou profile image
Catlou

ryary. after i'm on it i walk like i'm drunk. fall over. but i hear so much good and its just time released sineret.

Beemacs profile image
Beemacs

I've tried Rytary twice. The last time the whole 2017 year but I'm giving up on it again. When I think I have it figured & it works it just does for a short while. I thought it was going to be answered prayers~~it was a nightmare instead!

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