Parkinson's Disease Support Group
Parkinson's disease is a movement disorder often characterized by muscle rigidity, tremor, a slowing of physical movement, and in extreme cases, a loss of physical movement. The primary symptoms of Parkinsons are due to excessive muscle contraction, normally caused by the insufficient formation and action of dopamine, which is produced in the dopaminergic neurons of the...
My Neurologist mentioned a time release version of Levo-Carbo drugs called Rytary. It is purported to give a longer "on" periods throughout the day, and is less affected by meals. I am taking a 5 pill per day regimen of the 25/100 Levo/Carbo pills, "Sinamet," and I take a lot of naps. On a routine day I take a pill upon waking. I take a couple hours to get functioning well and have a couple good hours. I take my second pill at 10 and by 10:20 I have the "sleepies" and take a 20-30 minute nap to get out of that. Next dose is 2pm and a nap at 2:20; 6pm and nap at 6:20. I take a pill at 10 pm and retire about 10:30. I awaken about 2 am and sleep listlessly the rest of the night.
Thinking about the time release aspect of the Rytary I decided on the following experimental routine.
I start as usual with a full dose at 6 am and my early mornings are the same. The other 4 tablets I cut in halves. I take a half tablet every 2 hours starting at 9am. So far this is working well with me. I have leveled out my day. I no longer loose an hour or more of productive time to napping. I believe I am sleeping better particularly because I am able to go back to deep sleep after my 2 am potty break. I still take an occasional nap (for cause.) For example if I am doing intense mental work, (I am learning to code web pages in Java Script,) I get mentally exhausted and befuddled; a 20 minute "power nap" snaps me right back. Best of all, however, is that I am not afflicted with the "sleepies" after each dose.
Oh yes! the reason I haven't tried the Rytary is that it is not in my drug plan's "formulary" so I would have to pay full price, an additional thousand dollars above my insurance costs.
I would like to hear about your experiences.
Thinking about the time release aspect of the Rytary I decided on the following experimental routine.
I start as usual with a full dose at 6 am and my early mornings are the same. The other 4 tablets I cut in halves. I take a half tablet every 2 hours starting at 9am. So far this is working well with me. I have leveled out my day. I no longer loose an hour or more of productive time to napping. I believe I am sleeping better particularly because I am able to go back to deep sleep after my 2 am potty break. I still take an occasional nap (for cause.) For example if I am doing intense mental work, (I am learning to code web pages in Java Script,) I get mentally exhausted and befuddled; a 20 minute "power nap" snaps me right back. Best of all, however, is that I am not afflicted with the "sleepies" after each dose.
Oh yes! the reason I haven't tried the Rytary is that it is not in my drug plan's "formulary" so I would have to pay full price, an additional thousand dollars above my insurance costs.
I would like to hear about your experiences.
I have no experience with it, so can't report. I am with an HMO, and they tend to not put new drugs on their formulary list until the generics come out, so this may not be available to me. If I keep hearing good things about it, I may be leaving my HMO and will find insurance that doesnt tie my hands. I am very leary of adding other drugs. If there is a possibility that Rytary can keep that from happening, or at least delay it, then I am all for trying it out.
BRET, I am amazed at your will power and ability to stay off the drugs. I cant conceive what it would be like to not have the sinemet right now. I know I have been in the honeymoon phase thus far, but I suspect I am coming out of it, and will start facing the downsides here in the near future.
I understand your argument about the drug companies, and it is a valid one. However there are good things that have come out of that system too.. I am not sure what the answer is to fix the system, but I appreciate your passion in educating others about its negative aspects and problems. I totally agree that we have to be proactive in doing our research, and being careful about what we take and the advice we follow. We have to be our own advocates and protectors and not think the professionals advice or recommendations are always what is best for us.
chemical formula for Rytary....C10H14N2O4H2O + C9H11NO4
chemical formula for Sinemet..C10H14N2O4H2O + C9H11NO4
THEY MADE IT INTO A DIFFERENT SHAPE AND/OR ALTERED THE COATING......how is this ok? of course it helps its sinemet...so even if it doesn't work any better it works and by placebo alone you can expect 10% of folks thinking its better just because the Dr told them it was. Even if its a little better because of the new shape in terms of absorption its the same ol song and dance.......and folks believe it.
peace
Brer T
I mentioned dividing my tablets. I am taking the Carb-Levo 25/100 mg tablets. When I follow my plan carefully I am able to function at a more stable plateau. This requires taking a half tablet every two hours during the day.
Notice I said "when." So many days I get to my last dose and I have a whole tablet left over. That means I missed two doses during the day, usually I have no idea when. I generally figure it out when I start shaking uncontrollably, but I never let myself double up to catch up. So many times the act of shutting off my alarm substitutes for the intended pill taking event. In addition we have trouble scheduling our life. Many times we are just in the middle of a meal when the two hour alarm sounds. We tend to do things spontaneously so a rigid schedule is hard to maintain.
It is working, but...