Is anyone using Rytary?

Unfortunately, Rytary didn't work for me. However, I have had PD for 5 years and have a very sensitive system when it comes to PD meds. Sometimes I think I have tried all combinations of meds but continue to strive for the perfect fit. With that said, I believe over all that I have seen more positive than negatives comments on Rytary

My sister has just started Rytary and neurologist is still trying to find the best dosage for her. Recently because she fell and went to the ER, the neurologist there prescribed for her to take Pyridostigmine (brand:Mestinon) 60 mg , to taken half tablet 3x d.
Does anyone here take this medication which is essentially prescribed for Myasthenia Gravis?

Hello @rossellini and welcome to Mayo Clinic Connet. I so appreciate you adding to our discussion on Rytary. It sounds like you and your doctor found a dosage that works quite well for you. Congratulations on persisting in this way and working with your doctor.

As this is your first post on Mayo Connect, I hope that you will post a little more about your journey with dystonia. Please share as you are comfortable doing so.

I look forward to getting to know you better. Have you also had a diagnosis of Parkinson's? Do you see a movement disorder specialist?

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.