Rytary follow-up

[flyingfoxone]

We are continuing with the Rytary..every 4.5 hours during the day.. The 'ON' time is so much better; sometimes no 'OFF' time between dosing. We are still working to find the 'ideal' dosage, alternating between 95s and 145s... We definitely try to avoid eating an hour before and after taking...that seems to work the best for ensuring the medication takes effect regardless of whether we have protein or not. Medication kicks in within the first hour. Neurologist suggested taking three pills around 11PM for the night shift but this keeps my husband up all night. We have tried two capsules for the past two nights and that seems to work much better...would like to get that down to one if possible but we will tweak as we go. I noticed Rytary is now on the Medicare Formulary but the individual plans do not list pricing yet. We are still getting samples from the Neurologist but hopefully the pricing will be up soon. I read somewhere about watching when you take vitamins so I am working on the schedule for that. Hopefully some other users will give input soon. Good luck to all!

[etterus]

Have you previously been taking other pd meds such as comtan or amantadine?

[flyingfoxone in reply to etterus]

My husband was taking Stalevo (has Comtan) and C/L when necessary prior to the Rytary. Amantadine did not work for him as it exacerbated his orthostatic hypotension. He is not presently taking Comtan. Are you presently on Rytary? I would love to hear of your experience.

[etterus in reply to flyingfoxone]

I was given a sample from my local neuro, but I've not tried it yet. I'm to be seen by a DBS program guru next week and ill probably try the Rytary afterwards.

[flyingfoxone]

I wish you so much good luck with it. It seems to be working very well and it's so wonderful not to be taking meds every two hours.

[PeggyandDon]

My husband started Rytary two weeks ago, and when it's working, it's like a miracle, and then there's the "downside" for him, with increased hallucinations and delusional thinking. He was taking 25/100 Sinemet - two pills every 2 1/2 to three hours, depending upon how "on" or "off" he was. He was prescribed Rytary - 3 capsules of 61.25-245mg capsules - to take 3 capsules at 7 a.m., 3 at noon, and 3 at 5 p.m. The gap from 5 p.m. until 7 a.m. the next morning was just too long in between. He was also falling asleep for several hours after the 7 a.m. dose. The afternoons, and into the evening were much better, with up to 7 hours of "on" time prior to the last dose! We tweaked the dosage, with the falling asleep in the a.m. and some hallucinations later in the day, and also extended the time in between. Now we are giving him two capsules at 7 a.m. and 2 at 1:30-2:00 p.m. and two at 10:30 p.m. (approximately). If things don't "kick in", we sometimes add a third capsule after a half hour into the dose. We noticed that sometimes after three hours or so, there is about 15 minutes of "off" time, and then he kicks back into the "on" time for up to a couple hours. The extended-release beads in the capsules seems to be releasing unevenly, sometimes. There doesn't seem to be any additional dyskinesia, but as I mentioned, the hallucinations and delusions have been sometimes off the chart, and very disturbing. We are going to continue tweaking, and perhaps only give him one capsule at one of the two dosage times, and see if this helps. Don't want to completely give up on this medication, because we've seen some real progress and hope during the longer "on" times.

[flyingfoxone in reply to PeggyandDon]

I am no doctor but my husband was taking approximately the same C/L prior to starting Rytary. His Neurologist started him on two 195s three times a day and three 195s at bedtime. It seemed to be way too much...so much dyskinesia. Over time we reduced the dosage. He is currently taking 2 95s and 1 145 four times a day and two 95s at bedtime. We too find sometimes it just does not seem to work but found that eating can have a big effect, protein or not. We try to not eat an hour before and two hours after taking (same with other meds and vitamins) which is not that hard with the longer 'on times'. He does not have hallucinations but at times anxious. I wish there were more feedback from others taking the medicine because, like you, we feel this has real promise.

[Beemacs in reply to flyingfoxone]

I am moving more now that I'm on Rytary. I had come to almost a complete stand-still on c/l 25-100, Requip, Amantadine & Azilect. I have been tweaking since mid March. I have a LOT of dyskinesia & like you, I find that sometimes it works for a long time & sometimes not at all.

[flyingfoxone in reply to Beemacs]

Yes, interesting drug. My husband had dyskinesia before and now that we have the proper dose does not have more than he used to have but I was hoping it might reduce it since it's supposed to deliver the drug more evenly..but I guess you can't have everything. We do find it is very sensitive to when you eat and now try to eat an hour before taking for sure and then wait at least an hour after (once it kicks in, we seem to be okay). My husband also takes Tums and an acid reducer and these have to be taken with the same time restrictions. Still trying to work out something for the night. He seems to wake more with the rytary so we are back to the C/L for the evening hours but still hopeful we will come to a good medium soon. Thanks for keeping posting; it's so great to have some input and ways we can 'tweak'.

[justaninconvenience in reply to flyingfoxone]

I have PD for past 8 years and question any and all of you how important to take any C/L at all from 9pm on until wake up @ 6 or 7 am. I exercise 5 to 6 days and 2x day on occasion. As long as i remove stress (not so easy) early eve i can wind down usually and find taking any c/l only ruins my sleep.

[Ladybugg57]

rytary.com/patients-resourc... you can print a card that willl make your c opay no more than 25.00!!