Sinemet vs. Rytary

[JimmyA1974]

Does anyone have experience with these? How does Sinemet perform vs. Rotary. Which do you prefer and why. My neurologist recommended the latter, but I'm not so sure that's the best choice. Would love your opinions.

[IUPUOSU]

Hi, JimmyA!

I’m a fairly new member and am at the early stages of management with my PD. When I decided to begin medication in early 2022, I started with Sinemet, then Sinemet and Sinemet CR, and now Rytary. I have been on Rytary for over a year now.

Dosages and frequency of each were adjusted multiple times along the way to optimize management. When the neurologist feels that we have maxed out on a given phase (either having more “off time” and/or signs of dyskinesia), she has suggested that I move to the next one. I have been very pleased with my symptom control at each stage and have been able to continue my desired lifestyle and activity level. Again, I’m in the early phases of management.

As I’m sure you are aware, our responses to medications are individualized and can change over time. Informing yourself about the medications, seeking advice from your doctor, and getting opinions from others on this site are great steps in helping you decide which route to take!

While you await other responses, if you haven’t done so already, I suggest that you go to the “Posts” option above for this forum and search for prior posts using the keyword “Rytary.” This is how I keep myself informed on this topic - there is a ton of valuable insight from others on it! I also have a more detailed reply or two on my experience with it.

Please pay particular attention to insurance coverage issues, which seem fairly common. The pre-approval process from my insurance company took a while, but the drug manufacturer supplied the Rytary as part of a patient assistance plan in the interim. Once it was approved, I had no issues until re-approval was required one year later by my plan. For some reason, that annual re-approval was a challenge, but it eventually was approved. Also, I’m not sure if your insurance will require a trial of less expensive meds (Sinemet or others) before Rytary will be covered or not. You may want to check into the specifics of your plan’s coverage if you have not already done so.

One more piece of advice regarding this forum… I use the search tool all of the time to search prior posts as a first step in researching medications, supplements, symptoms, side effects, etc. I’ll peruse general posts a few times per week. I’m very grateful to the other members for their time and efforts posting - so much education and support happens here! I hope you find this forum to be beneficial, as well!

Hoping you have a positive experience with whichever route that you decide to take!

[JimmyA1974 in reply to IUPUOSU]

Thanks for your comments.

[Shakesalot]

I switched to Rytary since it is time-released. It has been very effective for me with minimizing "off time" since it evenly releases the carbodopa/Levodopa over time.

[JimmyA1974 in reply to Shakesalot]

Thanks very much.

[rebtar]

I’m still in the process of trialling Rytary. I’m eight years from diagnosis, and I was combining C/L IR with CR, four times per day plus the bedtime dose, and having significant OFF time.

Rytary can be tricky. Food does impact it.

If I take too much at the last dose (6pm), it interferes with sleep.

One of the big upsides is having enough space between doses to eat three meals! I had been losing too much weight, trying to avoid food interaction.

BUT, if I take it on an empty stomach in the evening (I forgot lunch one day), it gave me horrible dyskinesia.

If I take too much I get horribly impulsive, almost manic.

So, fir me at least, and I’m sensitive to meds, it’s tricky.

[JimmyA1974 in reply to rebtar]

Thank you very much.

[House2]

Rytary and Nourianz have really made a huge difference for me. Stiffness and tremors are reduced by 80%. The costs even with insurance and discounts makes it unsustainable for me. I’m paying $1400 / month I’ll have to look for an alternative soon. Which is really heartbreaking.

[Xenopus in reply to House2]

cost of the drug Rytary made it prohibitive for my spouse. There is no generic version of it yet so in the US the $$ is unsustainable for most patients.

[Parkie369 in reply to House2]

Check out the PAN Foundation. They will absorb the costs your insurance will not cover. Google them.

[JimmyA1974 in reply to House2]

Thank you. I appreciate your input.

[kaypeeoh]

I tried Sinemet and later tried Rytary. My symptoms are mild enough that it's impossible to know whether one is better than the other. Hard to remember but I think Simemet made me ultra tired. If I forget a dose late in the day I develop double vision. When I take the drug the double vison subsides. That's about it. Exams show tightness in my left leg. But no walking problems or balance problems.

[JimmyA1974 in reply to kaypeeoh]

Thank you. Much appreciated.

[Sherry1960]

When I was first dx with PD in 2014, my MDS put me on Mirapex. It is an agonist. I didn’t like the side effects so I was put on Rytary. It smoothed out the ups and downs of dopamine. The beads in the capsule allow a slower release. I have had success with it.

[jackedmonston]

after 8 years I switched from generic C/ L to Rytary. I had to switch back for a few weeks to get prior approval from my insurer for the much more expensive drug. Rytary was better but in the last couple of years it has been less effective. So I am looking at the Duopa pump. Were I younger (I’m 80) I would wait until Focused Ultrasound PTT became available in US in next year or two. I would even consider DBS, a much more invasive procedure. Both procedures claim to have a 60 percent reduction in symptoms.