Experience with Rytary

Hi folks. I am exploring the option of switching to Rytary from Sinemet and wanted to see if anyone else has done so and what are your experiences?

[Icequeen10]

I tried it. It was amazing.. I have not felt that good physically and emotionally in years..within just a few hours I felt the. PD. BrainFog lift. Physically I was alert, energized -. In fact I had to stop my self from getting up and. walking to. the kitchen. I started on max dose. I got thrush orally. Was unable to swallow any pills or eat. Scary time. I am eager to try it again starting lower dose. It seems that no one talks much about Rytary. They say that they take it and find it works well, or they say they tried it and it didn't work ....but never details?

[Shaker33 in reply to Icequeen10]

It makes me thirsty. So u have to drink a lot of water. I am on the 2nd lowest one. I take Rytary with 1 or 1/2 immediate release 25/100. I need to fill in through the day Its very expensive. Looking at ways to have the cost reduced. I do feel good on it though.

[Hidden in reply to Shaker33]

Thanks for the info. Are you on the medication now?

[Hidden in reply to Icequeen10]

Thanks for the response. Are you taking it now? Do you have off times?

[Shaker33 in reply to Hidden]

Yes I am still taking it. I start at 7:30 AM with 1 capsule plus 1/2 25/100 Immediate release. Then 11:30 AM. I take another capsule with 1 25/100. Then 3:30 I take another capsule with 1 25/100. Then at 7:30 PM, I take 1 or 1.5 25/100. So I take 3.5 or 4 per day of 25/100 immediate release plus the 3 capsules of Rytary - a mixed approach. Oh. I also take a 25/100 CR at about 10:30 pm. I sometimes do have off time and if I do, I take the next dose a little earlier. Ex: If I am due at 3:30 PM and I am off at 2:30, I may take that med early.

[Hidden in reply to Shaker33]

Thanks for the info

[JAS9 in reply to Icequeen10]

OK details. My dx was 11 years ago and I couldn't tolerate Sinemet, and I tried mucuna but couldn't get the dose right (worked with a naturopathic doctor trained in it and it just didn't work for me). Until 4 years ago when my neurologist started me on Rytary, I was pretty miserable and my PD symptoms were quite severe: the list of my symptoms would be long (tremors and movement problems of many types, plus mental confusion, plus aching, unable to sleep, turn over in bed, get out of bed, feed myself, walk without falling; basically you name the symptom and I had it. I have no doubt that if I stopped Rytary, it would all come back, but worse.

Rytary was a gd miracle for me. My symptoms are diminished, not gone. But, Rytary, plus HDT which I started 5 months ago, plus lots of exercise, plus maybe some of the supplements I take, plus cleaning up my diet, have all added up to being able to do - and feel - maybe 75% better. My dosing schedule has gone from four 245mg pills a day to 5 (occasionally 6 if I have had to take any early) so my PD is still "progressing", but after adding more exercise and HDT it's now slowed down at least. I no longer experience freezing and I can walk, jog, skip, and even dance just like John Travolta (like he dances today, not in the movie).

The elephant in the room is cost. I had to have it and my Medicare wasn't enough, so I found a foundation that helps people who can't afford critical medication. (PANfoundation.org). There's another one too. If you need more info, send me a private msg.

[Hidden in reply to JAS9]

Thanks

[Dehlia]

Too expensive🥴

[PDGal4 in reply to Dehlia]

If you go onto the rytary site online, there's information on the company helping with costs. My co-pay went from $60 to $20 per month.

[Hidden in reply to PDGal4]

Please let me know more about your experience with Rytary.

[Larkr]

My husband tried to switch over to it two times and both times he had severe joint pain. The doctor thought that was a strange side effect that wasnt listed under rytary.

[grandmama16]

My husband is on Sinimet and sometimes Resigilin. He is dissapointed with the Nuerologist he has now...not much help....so he trys different doses on his own, staying pretty much as low as he can. He fell a couple of times 2 years ago on Resigilin so stopped. We felt it may have affected blood pressure. He used to exercise but the class was pricey for us and I've wanted him to try Rock Steady Boxing but the same problem. He has become appathetic and has gained alot of weight, mostly belly. He's 76. Also his feet and ankles are puffy. Anyone know why? Or is that common. We go to a support group but haven't asked. What exactly us Rytary? When first dx he went to the Univ. center an hour away and was happy with them but then the main Dr. moved so he switched to one here. He also refused to go back to regular GP here and I wish he would due to swollen feet. His PD symptoms aren't really bad, some tremor especially in eve, and difficulty getting up and going from chair. However he doesn't talk about any other he may have inwardly but he probably has brain fog and fatigue as I do with Fibromyalgia. He doesn't get anything done unless I specifically ask. Our kitchen faucet has been broken for two weeks. We thought we had arranged for new one and new sink but then price was out of range. We do have new faucet given to us by son a year ago...now just need install with no new sink. Soon I hope by son. Again, what is Rytary?

[Hidden in reply to grandmama16]

Rytary is a new long acting form of Sinemet. See youtu.be/wTbVKhQr1mE(Not working as expected?)

[Juliegrace in reply to grandmama16]

Sinemet does not, as far as I know, cause swelling in the feet and ankles. Other PD meds, Mirapex and Requip do. If he's not on any other meds you should have him checked out by your GP.

[Icequeen10]

Yes,. I have swelling on Requip(! Quit using it.