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The doctors don't give the full story because they don't know it - they don't have time to listen properly. > Date: Fri, 26 Jun 2015 23:39:20 -0700 > From: [log in to unmask] > Subject: Re: Rytary > To: [log in to unmask] > > 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 ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn