Is anyone using Rytary?

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.

Will post periodically - especially about how the carbidopa/levodopa is working out at 4 times per day ... every 3 1/2 hours. And I'll be continuing with a once-a-day dose of Azilect (rasageline) pill, 1mg, to further prevent the growth of the disease and mitigate negative responses - physical ones especially. And, possible use of the drug Oreanze for off-time,

@hjscheib Hello Howard

I am so glad to hear that you are feeling better on your new medication routine. I appreciate the update and I look forward to hearing from you in the future.

Will you post periodically and let me know how you are doing?

Teresa--

Yes, had a teleconference with my doctor this past Friday and we both agreed that I would give up Rytary after about 9-10 weeks on the drug. It is too expensive and I had multiple side affects from it - increased anxiety; overall tiredness, especially in the thighs; extreme nervousness; little strength for Rock Steady Boxing, etc. I am now returning to carbidopa/levodopa (4X per day, 2 @25-100mg), 4X per day; and one Azilect at 1.0mg. I am feeling much better - calm and getting my strength back, no overall physical tiredness. If I need to have the off-time -= toward the end of each dosing period, he will prescribe a drug like Oreanz ((spelling?) and that should help me in the near and mi-range future. Howard

Hello @hjscheib

I noticed that you were thinking about switching meds to treat your PD. Have you made a decision on this yet?

I would enjoy hearing from you. Will you post an update when you are able?