-
Hi, all. This is Steve in Sarasota, FL, sending my first contribution to this on line forum. Diagnosed in 2013 and, like all of you, fighting the good fight against this horrible affliction. I haven’t seen another drug mentioned, so I’ll throw it into the mix. It’s Rytary, a time-release version of Sinemet, available in 4-5 strengths. The bad news – Rytary is still a branded drug and is VERY expensive. If I had to pay for Rytary, my expenses would be about $15,000 per year (that’s for a relatively heavy dosage schedule). I thank the lord every day that I retired from a very well-funded biological research institute, and my drug costs are covered completely by a fabulous medical plan. If you have the means (and I realize that many of us would have difficulty with the cost), ask your neurologist whether Rytary makes any sense. Your neurologist may be able to give you some samples to try.
Knowing that ” if you’ve met one PD patient, you’ve met one PD patient,” my experience with Rytary has generally been very good. I take the capsules one hour before each meal and one hour before bedtime. Rytary’s efficacy can last for 4-6 hours. But, of course, nothing with this disease is a fixed target. I have been experiencing more and more late afternoon “off” periods, and they are truly horrendous. All of the PD motor symptoms take over my body, and my anxiety levels go through the roof.
It so happens that I just returned from seeing my neurologist, and he prescribed a relatively smaller additional dose of Rytary, to be taken at 2:00 p.m. The hope is that the “off” experiences will diminish as a result of more levidopa in my system in the late afternoon. If the additional dosing does not help, or if my dyskinesia becomes unmanageable (currently, I can handle the “bobbing and weaving”), then we’ll have to go to Plan B. Plan B is a combination of Neupro (the patch) and smaller doses of Rytary.
I hope that my experience gives you something to discuss with your medical team. Good Luck !