Rytary… might stop??

[Rebtar]

After 6 days the following impressions…

I do get about an hour longer ON per dose. I was on a four hour cycle with IR, with about 2-3.5 ON per dose, depending on food.

Rytary gives me 4 hour ON on a 5 hour dose cycle, BUT, the afternoon slump around 3 pm (halfway between doses, but when endogenous dopamine is naturally low) is WORSE with some unexpected foot dystonia.

I also feel more sedated on Rytary, and between the afternoon slump and the med schedule, my exercise schedule of hiking late in the afternoon is disrupted. I walk in the AM, but not as much.

Sleep seems lighter. I don’t know if this is because of the Rytary, or not exercising in the afternoon.

I may need to shift the schedule to get that afternoon hike, see if that helps with the sleep.

For those of you who had worse sleep with Rytary, did you find it got worse as time went on? I already have sleep issues and have been tapering sleep meds (UGH), so I definitely don’t need more sleep problems.,,

[Gracie121]

Hi there, i switched to Rytary about four months ago, and it has taken a while in order to feel comfortable and settled. I do get more ‘on’ time with rytary but I do find it harder to sleep. Like yourself I was trying to pull off of you sleep meds, and I actually take a little bit more to get a good nights sleep. I do notice though that my 3 PM ‘crash’ seems a little bit more severe than previously. Like yourself I like to be out and about and exercising walking, hiking or going to the beach for a swim around that time so I’m trying to come up with a solution. Let me know if you come across something that works for you, I did want to respond since our experiences seems similar.

cheers , wishing you a wonderful weed

[Rebtar in reply to Gracie121]

thanks for your reply. I find it hard to do anything but sit in my chair most of the afternoon now. I think I’m less motivated on Rytary, because I feel more sedated. I want to reduce the sleep meds because I think they’re affecting me cognitively, and making me more apathetic. I’m pretty sure it’s not just the PD.

But then when I don’t sleep I have a really hard time managing my day. My husband works and he’s not good at managing a lot of details anyway, but I don’t feel confident figuring this out on my own…

I think I was better on the regular C/L but not sure. The roller coaster ups and down were bad, and I couldn’t figure out how to fit in enough food, was losing weight.

Been up since 2am… ruminating, not good. My sleep had more or less stabilized before I started Rytary.

I can’t increase the dose because it was higher when I started, and I impulsively ate too much protein and was OFF the rest of the day…impulse control— not good, short term memory, bad. And the higher dose didn’t help with that afternoon slump, it just made me more anxious when going OFF.

I guess back to my MDS, see if she has a suggestion, but I’m inclined to not continue with this experiment. From the first day I felt my thinking was foggier and more sedated…I think I’m repeating myself.

[Rebtar in reply to Gracie121]

My MDS suggested I take 1/2 C/L 25/100, at around 2:30, which helps with the afternoon slump.

Rytary does give me longer ON per dose, and it’s possible to eat three meals instead of two, so I’ve gained back a couple of pounds.

However, the sleep issue I think is unsustainable. I wake up (I think) around 2-3 am, maybe it’s earlier, and then I’m just sedated from the sleep meds for the rest of the night, but not sleeping. Not good. Plus it feels like Rytary makes my brain fog worse. It’s been three weeks, I’m checking in with my MDS (sent message, hope for reply Monday), but I don’t see a way around this issue, as too many sleep meds, can’t really add more, I really need to reduce them.

It’s a tough conundrum.

If you’ve found something that helps, let me know.

[Jmellano]

hi, I have been on rytary 4x per day, 7am,11am,3pm,7pm (2) 145 mg at first 3 dose times and (1) 95 and (1) 145 at 7pm for about 2 years . I was on c/l 5x per day. On that regimen, it would take 30 minutes to have any erecting and about 30 min before my next c/l dose I would experience akathisia so to smooth out my up and down times, neuro prescribed rytary. I have not had sleep issues , mainly rolling over in bed is a problem since I have been on rytary

[pdpatient]

I don't know how helpful my experience with Rytary for 4+years will be, but the bottom line is that the medication didn't work reliably enough for me most of the time. Caused severe speech issues, balance issues and freezing episodes if there was even a slight deviation from the optimal dose.

Supplementing with Carbidopa /Levodopa caused even more trouble. The best responses that I could achieve is when I did Intermittent Fasting the whole day and it was hard to keep up. Not only protein, but everything if the quantity was any larger than a small bowl.

I had an incredibly difficult time convincing my MDS to switch back to C/L and it almost didn't happen. Big pharma stuff I presume. He just would not give up until I agreed to get evaluated for DBS.

I am now completely back on C/L, Entacapone and Nourianz and I feel mostly fine. However, I still curse the day I asked my MDS if I could try Rytary.

Hope you have better luck.

PDP