It has been 10 days on RytaryER48.75MG-195 Caps. I experience all the symptoms that I previously experienced on Carbidopa-Levodopa 25-100 tablets. The exception is that I now get 6hrs of on time relief instead of the former 1hr and 45mins. I take the Rytary 3tabs at 5AM,1PM and 9PM. I supplement the Rytary with 1tab of Carbidopa-Levodopa at 11AM and 7PM. This works fairly good. I meet with my doctor April 16th (2 months after the last appt. when he prescribed the Rytary) and will ask if I can take the Rytary at 6hr intervals.
It seems that a side effect was nausea the first few days which now is diminishing but I experienced nausea to a lesser extent with the Carbidopa tablets.
I know this update is not scientific but thought it may help in some way.

My wife has had PD for 11 years. She has been on Rytary for about 3 weeks. She is taking 3 tabs 4X per day--7am, 12 noon, 5 pm and 10 pm. Also taking Ropineral 8 mg 2x per day and 1/2 tab of comtan when she takes the Rytary. First few weeks of Ryatary were amazing. Little if any off time, much better sleep, more energy and much more able to get around. A few days ago the morning dose was slower to kick in and the later doses began to wear off after 3.5 hours. Stiffer at night as well. We are uncertain what is going on, but wonder if Rytary is incredibly effected by food--especially protein. She may have been eating a bit more and enjoys nuts as a snack. with Sinemet she could wait 1/2hr and then be okay with nuts. I guess because it is so slow to metabolize protein is much more likely to impact things. I will see what her movement disorder doc thinks. It has been kind of disappointing to see this happen after a pretty impressive start. Any thoughts, experiences or suggestions would be welcome.

I assume protein would reduce or even negate rytary's affect just like with sinemet-CR. kind of strange that the protein affect wouldn't have been noticed right away if your wife started eating more protein right away. seems easy to test.
curious what strength pills she's taking. have you had the RX refilled, if so is it the same pills? ya never know. any digestive problems which could reduce absorption? any additional meds, supplements? if protein was the only culprit that wouldn't explain why the evening dose was less effective unless she was eating protein at night.

it will be interesting to see what your MD says, whether he will increase the doseage, add a regular sinemet to the dose or something else.

I have cheerios for breakfast every morning. My Rytary works fine. As peculiar as this may sound one morning I had a craving for chicken salad...that morning for the first and only time the Rytary didn't kick in.

Hi- I am a cc physician who was diagnosed 6 years ago at age 41--I have not had tremor or dyskinesia but certainly have significant off time-progressive over the years. I had relied predominantly on Stalevo---before i switched this weekend to Rytary I was taking C/L- 150 am -200 comtan and then C/L 100 with 100 Comptan at intervals--total 5 doses/day-not satisfied! My early experience with Rytary has been positive--despite switching "on a dime" and having a pretty bad viral infection- I am significantly better. I started 23.75/95 (4 capsules) TID--but noted that I was a bit "hyper" with this dose and my sleep was not as good. I changed to Rytary 23.75/95 x 4 iat 6-7 am--x3 approx. 11 am--x3 approx 2-3 pm and x2 6-7 pm---so I am taking the same toal dose but have been less wired in the early afternoon and have slept better----tel me what you think?---I obviously don't want to increase my risk of dyskinesias--experience is obviously limited but i would think that the lower exposure during the nightime might actually be better--any thoughts????

Any further update on your dosage or experience?
My husband is currently 3 at 145 four times a day. It is a very interesting drug. Sometimes he will get a good five hours of on time and then sometimes he can go the entire time between dosages without much response. We definitely try to have at least an hour before and after taking the med before eating. Dysk is better with the lower dosage and I am convinced you need the three at once of some dosage to work properly. Definitely sleeping better. Was wondering if anyone had updates on their experience.

This is my 40th day on Rytary (3-47.85/195MG capsules 4 times/day, every 4 hrs starting at 6AM) and I have recently had some moderate wearing off in afternoons around 4-5PM that lasts until my 6PM dose kicks in (I take 3 capsules at 2PM and my last 3 of the day at 6PM). Tomorrow I'm going to try an alternate dosing schedule my MDS gave me were I take 3 capsules every 3 hrs starting at 6AM then 9AM, Noon and 3PM with a single capsules at 6PM. We'll see how it goes. I have found that for me Rytary is very sensitive to when I eat (especially if my meal is high protein) My MDS recommended I wait 1 hr after taking Rytary for meals and it appears he was correct.

Slumpy

Hi,
My wife has PD over 12 years now, she is 66. She needs at least 1100 mg of Sinemet over 24 hrs. Her hallucinations have become so bad (people trying to hurt her) over the past year that we can not care for her at home. She has gone into two assisted living programs over the past 50 days. They have both asked her to leave because she is too difficult to care for and she can be disruptive. She was in the hospital (911) over the past 9 days in a geriatric/psych unit. They didn't do much for her and it was a waste of time. She should have been in a neuro unit with doc's who treat PD. She has been home for four days now and, between trying to help her when she's off and the hallucinations that terrify her, she is very difficult to care for. She is scheduled to go into a psych/assisted living facility this Monday. Most of the the residents are men with psych problems. Wife is very afraid of this. It is difficult finding a place where they help PD residents. We hope this will be temporary.
Her neurologist said she would try Rytary on my wife in a controlled setting. Neuro won't go above 1000 mg Sinemet and is trying different psych pills. Not working.
Has anyone taking Rytary now been dealing with hallucinations or psych issues before or after Rytary? How much "Sinemet" were you taking before as well? My wife is going thru hell with this disease. I feel her only hope now is to be evaluated for ECT at a well known psych hospital in Metro Boston. I have brought up ECT elsewhere on this PD Forum.

Luz is now off of Rytary for the time being after about 6 weeks of use. She started having Freezing of Gait which intensified with the last 2 weeks of use.
Within a day and a half off Rytary and back to Sinemet IR the freezing of gait subsided and only occasionally appears when she is overtired. She had a similar result with Sinemet CR so it looks like Rytary and Sinemet CR accumulate across doses for her.

I have a similar situation with my wife. Similar disease stage, and paranoid delusions. When she was on up to 1500 mg Sinemet and 4 mg Requip, she ended up paranoid. At 940 mg Sinemet alone, the paranoia went away completely, but off times were frequent. No other medications. Recently converted to Rytary, which has turned out to be more complicated than Sinemet, even though the off times are far fewer. Can't be certain yet what is the best dosage and dose timing.

If you look at the pharmacokinetics of Rytary, which is published in the Journal of Clinical Pharmacology, 2015, there is a big tail on the amount of Rytary that stays in the body after the first 5 or 6 hours. This tail lasts up to 12 hrs. If you take a dose while the tail of the prior dose is still in existence my experience is that you end up high on dopamine due to the cumulative effect of the two doses. This is where to danger of hallucinations creeps in. Even the overnight does not really lose the tail, depending on when the last dose was taken. Heavy, but not light, meals change this, and things can change if you miss a does one day too. I have not sufficient experience yet to say what to do about it in precise detail, but waiting until a dose wears off, while helpful, is not exactly what to do, because wearing off does not mean you have no dopamine in you. It just is not enough to overcome the down times.