Hi,
My wife has had PD for about 13 years now.Unfortunately, she is currently residing in a psychiatric assisted living facility because she was taking "too much" Sinemet. This enabled her to move for some of the day but also made her dopamine psychosis worse and she became impossible to care for. We were able to have her admitted to a well known Psych Hospital outside of Boston. She was interviewed by a psychiatrist, neurologist and general MD to see if she would qualify for ECT (shock treatment). She did qualify and the psychiatrist said she has had PD patients that were helped by ECT. My wife was an inpatient there for that purpose but she refused to have ECT. She is now in her third assisted living facility, the first two asked her to leave because they could not care for her and she was disruptive.
My wife's long term neurologist has reluctantly agreed to increase her Sinemet 25/100 to 8 tabs and Sinemet ER to 3 tabs = 1100 mg dopamine for 24 hours with nothing between 10 pm and 6 am. Neurologist insists this is enough L-dopa. Wife is off most of the day and wakes up off and in pain around 3 am.
I would appreciate any ideas.
1. What is the most Sinemet L-dopa that you or anyone can take over 24 hours and do you need a dose thru the night?
2. Is it possible that the Sinemet my wife gets prepacked by a pharmacy that the assisted living facility uses is not as effective as the Sinemet that she got from CVS?

1. everyone is different so has a unique maximum dose. as you get older higher risk of dyskinesia, hallucination, blood pressure drops and other side affects so i can see where a neuro would be reluctant to go much over 1000mg.
i suggest you inquire here if you haven't already. food of course could be a factor.
http://forum.parkinson.org/index.php...sk-the-doctor/

2. i've found some generic CR to be weaker than others. i take the teva brand of 25/100IR and mylan brand of 50/200CR. i'm basing this on an experience over a year old, maybe it was just 1 LOT and the other generic has improved, dunno. again, everyone is different.
since i get my RX's at an independent pharmacy and not a chain i can specify which generic i want and if costs more than what my insurance company will pay for then i make up the difference, chains don't offer that as far as i know.

Is she on any other kinds of meds at all?

My dad take generic carb/lev, a minor dose of Mirapex for the PD, Aleve for pain, and a few other meds - for cholesterol, acid reflux, and a baby aspirin.

without any mirapex is is pretty much chair/bed bound.. w/major fatigue.
with mirapex he has some confusion/ some hallucinations.. so it is a delicate balancing act..

generics can vary in quality.. so some of it might be that..
If she wakes during the night they don't give her anything then? why not?

I was preparing a post on Rytary, but it may have implications for your wife.

Rytary is composed of levodopa and carbidopa, just like Sinemet, but it is packaged differently to make it extended release. Hauser [1] writes:
"The usual maximum recommended daily dosage of Rytary is 612.5 mg/ 2450 mg."
Note, that's 2450mg of levodopa. I think the manufacturers of Rytary would argue that the higher figure is possible because the delivery is smoother.

Carrying on with this idea of smoothing, the average for Duodopa is 2000mg, and the maximum is 4000mg levodopa[2].

Everyone is different, things like body size needs to be taken into account, so high levels may not be possible for your wife. It seems to me that your wife has a very narrow range between having enough dopamine to function, yet having too much which causes complications. The challenge is to find a treatment regime that keeps her with the right level of dopamine, not too low and not to high.

Reference

[1] Clinical Medicine Journal, Vol. 1, No. 2, June 2015, Pub. Date: April 22, 2015
"How to Dose Carbidopa and Levodopa Extended-Release Capsules (Rytary)"
http://www.publicscienceframework.or...mj?paperId=429
Click on Download PDF
Robert Hauser

[2] http://www.abbvie.ca/content/dam/abb...DOPA_PM_EN.pdf

John

That's where my wife is. Not enough L-dopa and she can't move and is in pain. Too much and she is psychotic, she thinks I have girl friends, she sees people that aren't there and thinks she is being zapped.
She is on a lot of meds now: Serequel, Excelon patch and an antidepressant for psychosis, Trazodone to sleep and Midodrine for orthostatic hypo-tension.
Her neuro does not want her on Encaptone (Stelevo) or agonists like Mirapex because they make the psychosis worse. She needs more Sinemet than 1100mg to function and neuro is very resistant to going higher. Neuro is also against her taking Rytary. Actually, the neuro has tagged her with "Dopamine Dysregulation Syndrome", I disagree. An assisted living facility does not have the staff to spend the time she requires so she probably will be asked to leave.
The L-dopa pill she takes has an R stamped on it, I assume it's a generic Sinemet. Her urine is a pale yellow, it was much darker when she was taking a Teva 25/100. Anyone know anything about the R brand?
Thanks

Does it also have a number on the other side, like 538 or 540? It's manufactured by Actavis. They just merged with Allergan and combined are one of the largest pharmaceuticals in the world.

What has the neuro done to find that dose of Sinemet that is enough for your wife to cross the "on" threshold, yet not too much to cause complications?

Knowing how your wife's symptoms vary during the day, especially in relation to her doses of Sinemet, would be useful.

If the neuro is against using Rytary, but accepts that your wife needs more than 1100mg levodopa per day to function, would he consider increasing the frequency of the Sinemet dose, decreasing the size of the dose, while giving a slightly higher total than now. If this helps, the values could gradually be increased (in both dimensions) until the optimum is found.

As a general point, I think the key factor for PwP is the graph of levodopa, or equivalent, during the day, rather than just the size of the dose. For instance, 1mg rasagiline gives about a 100mg levodopa equivalent dose {LED), but it is effective for the whole 24 hours, so it gives about 4mg LED/hr. The Stalevo I take is effective for me for about 3 hours, so a 75mg pill, which has a LED of 100mg, gives about 33mg LED/hour. Not surprisingly, therefore, the Stalevo has a far more powerful effect on me. Even a hour is too long; continuous monitoring and dosing would be useful.

John

I would look at getting her seen by a MDS (Movement Disorder Specialist).

Yes, too much Levadopa is bad as too little. Fine line on the medication. Too much as you do become schizophrenic.

National Parkinson's Foundation is a fantastic resource, they are down in Florida, but the nursing staff accepts calls from all over the USA. They shut down for a week for July 4th vacation, but excellent resource.
*edit*
I realize there is many other issues that could be at play, I am just a person with Parkinson's.

With sinemet, slow changes are good. You do not want to increase/decrease rapidly. A fellow PWP would forget to take her medicines (she felt great and was convinced she did not need them... basically started hearing voice, and Police would be called... they tossed her into the Psych ward, no Parkinson's meds... but Psychiatrist would start giving her drugs to calm down the voices, and took her husband about a week to get her released... then about four week recovery to get back on Sinemet and her old self). This one reason I am a strong advocate as many Psychiatrist do not see PWP in the course of the day, but a MDS will deal with just movement disorders (often it can be four to six MONTHS for that first visit... good ones are booked up!). When I am "on" you would be hard pressed to have any idea I had Parkinson's, yet when "off" I appear drunk with loss of balance and slurred speech. I do wear my bracelet when traveling, but not around town.

John.. I take 8 -- 4 time 2 - 25/100 daily -- and 4 times Comtan 200mg daily. This is equivalent to Stelevo (I take Generic, so copay is around $20 a month/Stalevo would be $200/Rytary around $600 with my insurance). I'm doing good with the genetic Sinement and Comtan (just occasional hallucinations, but pleasant ones). Worst part is I typically sleep three hours a night, out like a light at 10pm.. awake at 1... but rest in bed till three so I am not so exhausted.

Ashley... Best of luck to you and your wife.

you have my sympathies for sure, you have to deal with a lot more than pd.

the only thing i would point out is you can make the argument that 300mg CR may be only 60% bioavailable so your calculation would be 800mg + .60x300=980mg

are you sure those are 25/100mg CR? i guess you call them ER. I'd try to get the dr. to change the RX to 50/200 which can be split so you can vary the doseage. Maybe he doesn't want to give her RYTARY all day long but what about as the last dose of the day?

i certainly find it strange she isn't given any sinemet at bed and if she wakes up in the middle of the night, most pd'ers take a 50/200 at bed and keep sinemet by their bedside if they wake up.

too bad she can't take requipXL, i assume agonists are not an option at her age and medical condition?

My neurologist has increased my dosage of Levodopa in 5 years to 9 tabs of Rytary 48.75 MG -195 (approx 1755mg of Levodopa). I take an additional 3 tablets Carb/Levo 25-100 to supplement the Rytary. In addition i take 1 carb/levo ER 200 at bedtime. I have had two neurologists at a leading hospital tell me not to worry about the high dosage. I have brought up repeatedly that I was worried about taking too much and increasing my dosage too fast.
I read the posts on neuro talk daily and do not read about anyone else taking as much as me. Today for the first time I asked on Yahoo "What amount of Levodopa is too much. WEB MD and others were vague and said there were many variables but one site said 1900 is the cut-off point.
I appeal to all of you. Am I being misled? Am I taking too much?