Problems using extended release types of Carbidopa Levodopa.

[Bailey_Texas]

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

[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 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 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]

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 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]

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

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

[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 in reply to silvestrov]

where do you get levodopa methyl ester ?

[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 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 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 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]

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]

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]

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]

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!