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this just makes me mad!! my grandfather died in 1968 of PD complications when Sinemet first came out and 47 years later it doesn't sound like things have gotten any better. I take one Rytary daily which doesn't help but dyskinesia is minimal. you'd think by now treatments would be better. what a nightmare! -----Original Message----- From: Ruellene and Roger Seymour Sent: Friday, June 26, 2015 2:00 PM To: [log in to unmask] Subject: Re: Rytary Nancy, I am not surprised that you had the initial results as you described. They make sense in view of what I have experienced in my continuing transition from Sinemet to Rytary. Some things I've observed: 1. As with Sinemet CR, Rytary takes longer to get into your system. I suppose that's not technically correct: it starts to release the levodopa/carbidopa promptly but at lower levels, and continues to do so gradually. Whereas, with the regular Sinemet, I feel it kicking in after about a half hour, it takes an hour or slightly longer to feel the same with Rytary. During this time, while I'm waiting for the Rytary, my symptoms sometimes get worse. 2. For whatever reason (timing around meals, stress, just having an "off" day), doses of Rytary may not have much effect. So, for example, if I still have symptoms (tremors, stiffness, etc) two hours after taking a dose of Rytary, I'll take a 25/100 pill of regular sinemet. I may end up with a little higher level of dyskinesia once the Sinemet has kicked in, indicating that the Rytary was working, I just wasn't getting the full effect. 3. I find that the effect of the Rytary fades slowly enough that, when the tremors start to return, I have enough time to take the next dose and not have to worry about the symptoms getting a lot worse. This was not the case when I was taking Sinemet: the rise and fall were so quick, relatively speaking, that, once I feel the tremor return, it was too late - the next dose would not kick in before the tremors got much worse. I think this is an advantage in that, again, depending on the day, I can sometimes go 5 hours or more between doses whereas sticking with a strict 4-hour interval will result in more dyskinesia. 4. If I go too long between doses of Rytary, and my symptoms are starting to get pretty bad, I'll take a 25/100 Sinemet along with the regular dose of Rytary. This gets me back on track quicker. 5. The Rytary that I take (61.25/245 mg capsules) has the same ratio of carbidopa/levodopa as Sinemet. Apparently, the manufacturer thought that, by making the numbers a little different (245 vs 250 mg), that doses of Rytary and Sinemet wouldn't be confused. 6. I have sensed, in this group and among other PD groups, a sense of frustration that patients are not getting the full story on Rytary from their doctors. My opinion is that, with Rytary being new and not very widely prescribed yet, the docs don't have much anecdotal or empirical data yet and are doing their best to find appropriate regimens for their patients. The fact that guidelines for transitioning from Sinemet to Rytary (see articles mentioned in Maryse's and my previous posts) have been published for the medical community speaks, to me, to the fact that there is a degree of uncertainty and a need to use best educated guesses in prescribing Rytary. It's going to be us guinea pigs with our stories that will help inform the prescribers, so keep sharing. Lastly, the above descriptions and opinions are intended to represent only one example, my own, of possible strategies, benefits and pitfalls of taking Rytary and in no way should they be construed as endorsement or recommendation for anyone else to make like changes without consulting their personal physicians. All the best. Roger On Thu, Jun 18, 2015 at 5:02 PM, Nancy Dean <[log in to unmask]> wrote: > Hi Tony, > my doctor wanted me to try rytary out also. I am now in my 4th day!! > > I was on a 2 hour regime with the sinemet with no hallucinations etc. So I > am supposedly a good candidate for rytary. BUT, what I was not told was > that it takes 2 - 4 weeks for the body to adjust to rytary. In the > meantime, I started have fierce tremors which started up very suddenly. So > yesterday, I was told to take sinemet when this happens. Today, I am to > start a diary of when I have to take the sinemet to stop the tremors. I am > now up to a three hour break from tremors today - 4th day. Tomorrow may be > longer breaks - who knows. > > All I do know from this experience is that please get as much information > as you can from the the doctor before your wife starts with rytary. I did > not have all the information and had a rough day yesterday until I got the > information I needed. > > best, > Nancy > > > > On Jun 10, 2015, at 2:34 PM, AW Adler <[log in to unmask]> wrote: > > > > My wife's neurologist has suggested she switch from Sinemet to Rytary. > Does anyone have any experience with the drug? I know it is fairly new to > the market and as far as I can tell from the literature just Sinemet in > delayed release capsules. > > Tony CG for Donna > > > > ---------------------------------------------------------------------- > > To sign-off Parkinsn send a message to: mailto: > [log in to unmask] > > In the body of the message put: signoff parkinsn > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: mailto: > [log in to unmask] > In the body of the message put: signoff parkinsn > ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn