Is anyone using Rytary?

after consulting with my neurologist (a movement disorder specialist0, we went back to carb./levo., increased my dosage in it, to two pills 4X per day and I feel much better, all around. With the 4th dose of carb./lev. my doctor thought there would be enough coverage through off periods, and I think he is correct. @howard (Howard Scheiber, PhD)

Just gave up Rytary because it didn't seem to be doing anything positive for me. I was physically tired, couldn't walk any distance without feeling tired, my thighs were especially tired and week, my mood was not positive (sometimes bothersome, sometimes nasty), I was anxious, and the anxiety was harsh. The cost of the drug was, also, very high and it didn't do anything positive for me. I took 4 capsules 3 times per day and became increasingly (physically) weak and tired as the day and the daily doses progressed. I did not feel at all like i used to with my carbidopa/levodopa, So now, I'm taking carb/lev 4 times per day, 25-100, and 2 per dose. The minor nausea is either not noticed at all or just hits & runs, w/o my even feeling it - a 6-7 oz. Pepsi is sufficient for me if the nausea gets harsher. I have a good friend who began a regimen of Rytary, different size capsules and different dosage and he seems to like it, although he never (yet) has told me why he favors the Rytary (we see different doctors and have had PD for the same amount of time. Might be that he likes this drug at least partially because it is on his insurance company's lower price meds formulary.

Will let you know ...

Hi @hjscheib The previous response was to another member, @parkiegirl. Sorry if you thought it was addressed to you. You can always tell who a response is being addressed to by looking at the header of the post.

I look forward to hearing how Rock Steady Boxing feels after your change in meds.

Yes, see the previous "reply" from me. Dropping the Rytary and moving back to carb./levo, and adding a dose by giving 4 doses, 4 times daily, so he (my neurologist) figures the 4 doses spread throughout the day should cover my off-periods and prevent any tremor or reduce automatic movements (any dyskinesia) a 3-dose regimen would not cover. Best of all, though, is that, overall, I feel stronger physically and more like my old self, without the tiredness feeling, without feeling particularly drained before I try to exercise, I'll be attending my first Rock Steady boxing session tomorrow and predict I will feel stronger, and get less worn out during the Rock Steady hour-long session. I also take 1 1/mg Azilect (rasageline) pill (once daily) to prevent the PD from worsening, and to keep the symptoms relatively mild and reduce the physical effects from worsening.

That seems like a good plan, @parkiegirl . I hope it works well for you.

We lowered the dose and see how it goes. I might go back to C/L if I am still having issues.

Hi @parkiegirl,

Have you talked with your doctor about a replacement for the Rytary?
I hope that you begin to feel better.

Will you post an update when you start your new meds?

Event the first couple of days on my new med dosing schedule - 2 carbidopa/levodopa pills four times per day (25-100); 3 1/2 hours apart - feel stronger already. Rytary did have a number of negative effects for me: overall physical tiredness, although I hadn't done serious exercises; thighs that could hardly hold me up on some days; more intense
anxiety/nervousness/irritableness; periodic but mild dyskinesia. My wife was watching me pretty carefully and jotted down most of the negative effects. So my neurologist/movement specialist gave me the usual test involving my ability to move and by the end of the teleconference, we had set up the new (traditional) med dosing schedule, noted above, and coupled with Azilect (rasageline, 1 mg per day). The extra dose of carbidopa./levodopa is included in the schedule to reduce off-periods. If the four-dose schedule doesn't work maximally, we will add a med like Orianze to better cover off-periods. Apparently, Stalevo is a "new" version of carb/lev EX, and carb / levo; and Rytary is a "new" version of carb / levo / entacapone. At any rate, Stalevo (brand name) and entacapone are used during off-periods of other meds (carb / levo) to treat "wearing off" of Parkinson's symtoms. Entacapone seems to be a strong med which helps during off-periods but might have serious negative effects. NOTE: Please share this message with the other PD patients on this collection of PD-related meds, dosing, negative drug effects, etc. [ Howard Scheiber PhD ]

Glad to hear you are feeling better. I am debating on giving up on Rytary as well. Lots of side effects, and dyskinesia.