Rytary: Success? If so, how? I'm stumped
 

I'm having a tough time making Rytary work for me, but so want it to! With 16 years of PD under my belt, and Stalevo 75 or 50 (plus Azilect and Tasmar) every two hours, I was hoping Rytary would give me longer On's and gradually replace Stalevo. Well, not so fast!
I was doing pretty well without Rytary until late afternoon, with pretty good on's, assisted by 3 miles daily on exercise bike, plus high-intensity bursts making my On's even better. But.... my unpredictable, fluctuating Offs were bad in the evenings, even after a nap, (which help sometimes.)
So I decided to try the highly touted Rytary,under my neuro's supervision, beginning with a week of replacing 2 pm Stalevo with Rytary, next week replacing a 4 pm Stalevo with Rytary, etc.
Well, the first week, and still now by the fourth week, Rytary takes a good 4 hours to kick in, and thus I get a terrible Off until my next planned dose of Stalevo 2 hours later. Adding a second dose at 4 pm meant I was Off for 2 doses, so I went back to one per day, and played with the timing, switching my dose to 6 pm or 8 pm. It does seem to last about 3 & 1/2 hours when it finally works, and I think that the next day, my On's are better.
But I can't bear the 2 Off hours until it kicks in, and then I get bad dyskinesias when it does. I tried taking it at 4 am, but ended up with awful dyskinesias which kept me awake, and dyskinetic throughout the next day.
Anyone???

just a shot in the dark but you might try contacting
Robert A. Hauser, MD, MBA
Parkinson’s Disease and Movement Disorders Center

http://www.scribd.com/doc/258488669/...3-12-15#scribd

Robert Hauser, MD, MBA
Director, COLLEGE OF MEDICINE NEUROLOGY
Professor, COLLEGE OF MEDICINE NEUROLOGY
Director, Parkinson's Disease and Movement Disorde, Neurology, University of South Florida
Professor, Neurology, University of South Florida

Contact Info 4001 E. Fletcher Ave
6th Floor
Tampa, FL 33613

Academic Email: rhauser@health.usf.edu

Academic Phone: (813) 396-0765

Stumped?
 

My experience with Rytary has been very positive. I was taking Stalevo 100 every four hours with 1 1/2 hours off time each. I switched to taking the 245 dosage of Rytary every four hours with basically no off times. I do not have the super high spike of Stalevo, however, after three weeks I see dramatic improvement in my movement, awareness, flexibility, stamina. I am also taking Amantadine ER for dyskinesia, one Azilect each morning, and Mirapex three times per day. Be patient with the Rytary as the benefits seem to compound over time.

I'm no doctor, but here's how I'd go about analysing the situation.

The first thing that sticks out is that you're taking two COMT inhibitors: entacapone (in the Stalevo) and tolcapone (the Tasmar). Why?

To a first approximation your symptoms are likely to be caused by a lack of dopamine in the brain (bradykinesia) or a surplus (dyskinesias). So, ideally you would know what the levels are that work for you, what the levels actually are, and have a way of adjusting them back to the right level. Of course, PwP don't have access to this data and even if we did, for reasons such as protein in the diet and gastric emptying, the amount and timing of the arrival in the brain of levodopa (which to be of use needs to be converted into dopamine) varies.

As I understand current thinking the aim is to keep dopamine levels as constant as possible. The drugs we take need to be timed correctly so as to do this.

When comparing different medication regimes I find it useful to use the concept of levodopa equivalent dose. For instance, 75mg Stalevo is roughly equivalent to 100mg Sinemet.

For a list of exchange rates see:

http://neurotalk.psychcentral.com/thread183360.html

If you add together all the LED of the pills taken in a day, you get the levodopa equivalent daily dose (LEDD).

How does the LEDD before the change in the meds compare with that after?

Even if the LEDD after is the same as that before, we may still have problems due to the timing and intensity of the medications. For instance, 1mg rasagiline (Azilect) has a LED of 100mg, the same as Sinemet. But the rasagiline will be effective for 24hrs whereas, depending on the person, the Sinemet is effective between 2-4hrs. So, Sinemet is about 8 times more intense, but only acts for about 1/8th as long.

If you know how long your drugs work for you, you can draw a graph showing the contribution of each drug. If you don't know, you can use finger taps. See:

http://neurotalk.psychcentral.com/thread169655.html

John

It kicks in slowly over 30 mins and I stay on anywhere from 3 to 4.5 hrs throughout the day. In the evening I take a 200 c/r to help through the night. My problem is some bad dyskinesias mainly in the evening.It includes a dry mouth and swollen tongue.It feels that way anyway. Got to be a tweek to get rid of that. Currently 3 195 tid.

I'm back to Stalevo
 

It took me 4 month to try Rytary. My sleep disruption - wake up at 4am - started shortly after I've started Rytary. Also I've got depression and pain in legs below knees. Finally I gave up and turned back, can sleep now till 6am. legs are better. Depression gone.