Is anyone using Rytary?

I take Rytary for dystonia and I've been on it for at least 6 years. When I was first prescribed Rytary I was given 36.25mg/145mg and took 3 capsules 3 times a day but I had moderate to severe dyskinesia from it. Over the years the neurologist lowered the intake and even changed the dose to try to limit the dyskinesia until he found the right amount. Rytary helps my dystonia quite well and for me taking 1 capsule of the 36.25mg/145mg three times a day helps my movement disorder quite a bit. I have very few side effects from the medicine.

I took Rytary earlier this year (late July, August, part of September) for ten weeks for the same reasons being presented by another PD writer to Connect: to bolster my off periods and strengthen my time on. My doctor convinced me that it should be a very positive change for me. It did NOT work at all; my off-periods were far worse, it tired me out physically - thighs, calves, especially; and the emotional effects during the off periods were worse, also. We quit Rytary - the dosing was very problematic - and my doctor/ a Movement Disorder specialist thought that going back to carbo/levo, adding a 4th dose might provide the impetus for reducing the negative reactions or effects of PD during off periods. I am now back to carbo/levo and have been taking the 4 doses of carbo/levo for a few months and I feel much better (2 each dose at 8:00, 11:30, 3:00, and 6:30) and more-or-less back to my former self, physically, without the overwhelming tiredness associated, for me, with the Rytary (I forget the various dosing numbers on Rytary as we needed to change it a few times) but the main and final dosing was: 5 capsules (23.75/95mg) 3 times a day. And my emotional state is improved. Also, relieved not to have to pay so much every 90 days for the Rytary (just a form of carbodopa/levodopa, with extended release. - Howard

I misspoke in regard to the carbidopa/levodopa: dose and schedule is the following: 2 carb/levo pills, four time a day (8:00 a.m., 11:30 a.m., 3:00 p.m., and the final dose is at 6:30 p.m. Additionally, I have been seeing another Movement Disorder specialist for Botox treatments on my right foot, which moves quite a bit throughout the day. The initial round of Botox didn't change anything, but I am now seeing yet another specialist for the Botox, but he suggested that amantadine could keep my foot more steady and w/o continual motion. So far the amantadine hasn't really been working, so I think I'll try another round of Botox, probably in Feb. or March. Howard

I've only tried Rytary and carbidopa/levodopa; but, I used to take a different secondary drug (before I switched to Azilect) because the drug was giving me chest palpitations. That was for selegiline
Search instead for selegeline. Howard

I've had PD for 6.5 years and went back to carbi/levo 4X daily because I tried Rytary - a very expensive drug and didn't like the side
effects. The drug was tiring me out (thighs, lower legs, and calfs) every day I took the drug. So, my doctor thought that adding an extra dose of car/levo might just work to relieve me of the negative effects (emotional, mental stress) that we thought Rytary might eliminate during my off periods. But Rytary proved ineffective for in me not eliminating but enhancing the stress I had during off periods.

Howard

I'm glad to hear that it is working well for you. How many other meds have you tried since your diagnosis?

Still doing well during my off-periods. Still taking Azilect (rasagiline): 4 doses of carb/levo 4 times per day and doing well with this regimen.

I'm sorry to hear that your doctor is not being more proactive on your behalf, @parkiegirl. Can you seek a second opinion with a movement disorder specialist? This is a neurologist with special training in disorders like Parkinson's. Here is some information, https://www.michaeljfox.org/news/movement-disorder-specialists.

On the link there is a directory of movement disorder specialists. Will you take a look at it?

I am having trouble connecting with my doctor. He is not really proactive with reaching out to try new meds. He just has me stop the drug and then nothing until my next appointment. My worse symptom is my gait and cognitive problems.

I am sorry to hear that, @parkiegirl. Does your doctor offer you any other options? I'm wondering, also, what is your worst symptom now?