Carbidopa/Levidopa is full release right away and my body couldn’t handle it, so my Neurologist asked me to try Rytary which he said was the same Carb/Levidopa, but was slowly released into your body and it was an extended release that helps to prevent off times. I started on 1 capsule and slowly increased to 1 capsule 3 times a day. After a bit it began to wear off in 4 hrs and I would hit bottom. I called my doctor and he said we need to double it. And increased it to 2 pills slowly getting to 2 pills 3 times a day. I am doing better on Rytary, but it is extremely expensive. At a symposium I attended I talked to the representative for Rytary for quite some time and he told me to call Rytary and tell them although it helped me it was much too expensive and was there a way for me to get assistance. You have to fill out financial information on your monthly earnings and the amount you pay out and your husband or wife for co-pays for all medications you and he both take per month. You could get it free and if you didn’t qualify to get it free they could arrange for you to get it cheaper. So it is worth the effort to try and the person who helped me was eager to do everything she could to help me. It was close to the end of the year and we would have to reapply each Jan, so I decided to wait until this year’s taxes were done to redo our paperwork for assistance. I pay a co-pay of $ 287.00 for 90 days and that is bad enough, but when we went past our limit of money allowed for our medications we fell headfirst into the donut hole. It then cost us $ 555.00 for 90 days. It was near the end of the year so I didn’t have to pay that amount more than once thank God. Jan 1 it went down to the usual price co-pay but $10 more and now is $297.00 for 90 day supply. I heard there is a cheaper version of Carb/Levidopa, but I read something about the efficiency of the generic and decided it against it. I hope someone will find this info of my experience helpful in finding the best medication and ways to get it cheaper.
Hugs and My Best,
Carol
Scottsmom 😊

Yes. No. Yes. No.
Rytary is the same Carbidopa/Levadopa that's found in Sinemet and Stalevo. It's packaged in a time-release capsule that allows it to come on a little faster yet maintain an effective level of Levadopa in the blood stream for somewhere between 4 to 6 hours. You may need to experiment with dosages before you get to the right level since there's not a direct correlation to the dosages of levadopa in Sinemet or Stalevo. As far as "off time", the length of your "off time" should be reduced, but it's still "off time". Whatever effects you experience now will probably still occur, but with proper level of dosing, the length of time that you experience them, should be reduced.

I believe that Rytary is available in different strengths which can be combined to provide even more differences in daily dosages.

I take 2 of the 195mg capsules 4 times a day for a total of 8 capsules a day.

For those asking what Rytary is: It's a time released form of Carbidopa/Levadopa which was just approved by the FDA in January 2015. The objective is to reduce the on/off swings associated with pill forms of Levadopa.

Hope this helps.

I was on Stalevo previously and moved to Sinemet, and the results were not pleasant for me. Both Stalevo and Sinemet contain Carbidopa/Levadopa But Stalevo contains a third ingredient (CONT) that enables you to absorb the Carbi/Leva better than without it. Sinemet does not contain the third ingredient. I was taking 2-3x the amount of Carbi/Leva via Sinemet as compared to Stalevo and getting no results at all. My reactions were getting worse and my personality disorder was not pleasant. Finally after about 6 months, we went back to Stalevo and I stabilized. My wife pointed out to me that I was behaving totally different than in the previous 40 years we had been together. I went back on Stalevo for about a year then then moved to Rytary. I have been on Rytary now for two years and am pleased with it to date. I also take the Inbrija inhalant when an off period is coming or I feel the tremor occuring during a non expected time. The combination of Rytary and Inbrija as a supplement has been kind to me. I expect eventually there will be a reaction, or evolution of another symptom, and I will have to make a change, but in the meantime I go with Rytary. The one thing I have noticed with Rytary is that I am drinking a lot of liquid to stay hydrated. I tend to get dehydrated easier, and Gatorade helps keep me hydrated better than just water. That may be psychological, but it seems to be working for me. :-)
try.
Each of us is different and the drugs we take can affect us all differently. We can share our experiences and hopefully someone can use in their journey to their advantage. That is where a good physician can really aide you in your journey and no push you down a rat hole. If you feel like you are not being listened to, it might be time for a second opinion. I also found the most telling thing about my progression and actions were a journal. It's amazing what journal will tell us, if we give it the time and detail needed. One week's log of when I was getting up and what I was doing and thinking was enough for me to know, that something had to be done.

Take Care and Be Safe

I take the time released Rytary. I get mine free from a website called The Assistance Fund. Email is TAFcares.org.