A good friend from college worked for a major pharma company for several
years.  He used to say that you wouldn't believe how many "new" medicines
were simply new combinations of a few basic ones.  Rytary is a case in
point: same old stuff, just delivered differently

On Saturday, June 27, 2015, Rayilyn Brown <[log in to unmask]> wrote:

> 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
>> >
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