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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
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Week 4 June 1999, Week 3 June 1999, Week 2 June 1999, Week 1 May 1999, Week 5 May 1999, Week 4 May 1999, Week 3 May 1999, Week 2 May 1999, Week 1 April 1999, Week 5 April 1999, Week 4 April 1999, Week 3 April 1999, Week 2 April 1999, Week 1 March 1999, Week 5 March 1999, Week 4 March 1999, Week 3 March 1999, Week 2 March 1999, Week 1 February 1999, Week 4 February 1999, Week 3 February 1999, Week 2 February 1999, Week 1 January 1999, Week 5 January 1999, Week 4 January 1999, Week 3 January 1999, Week 2 January 1999, Week 1 December 1998, Week 5 December 1998, Week 4 December 1998, Week 3 December 1998, Week 2 December 1998, Week 1 November 1998, Week 5 November 1998, Week 4 November 1998, Week 3 November 1998, Week 2 November 1998, Week 1 October 1998, Week 5 October 1998, Week 4 October 1998, Week 3 October 1998, Week 2 October 1998, Week 1 September 1998, Week 5 September 1998, Week 4 September 1998, Week 3 September 1998, Week 2 September 1998, Week 1 August 1998, Week 5 August 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Week 4 October 1997, Week 3 October 1997, Week 2 October 1997, Week 1 September 1997, Week 5 September 1997, Week 4 September 1997, Week 3 September 1997, Week 2 September 1997, Week 1 August 1997, Week 5 August 1997, Week 4 August 1997, Week 3 August 1997, Week 2 August 1997, Week 1 July 1997, Week 5 July 1997, Week 4 July 1997, Week 3 July 1997, Week 2 July 1997, Week 1 June 1997, Week 5 June 1997, Week 4 June 1997, Week 3 June 1997, Week 2 June 1997, Week 1 May 1997, Week 5 May 1997, Week 4 May 1997, Week 3 May 1997, Week 2 May 1997, Week 1 April 1997, Week 5 April 1997, Week 4 April 1997, Week 3 April 1997, Week 2 April 1997, Week 1 March 1997, Week 5 March 1997, Week 4 March 1997, Week 3 March 1997, Week 2 March 1997, Week 1 February 1997, Week 5 February 1997, Week 4 February 1997, Week 3 February 1997, Week 2 February 1997, Week 1 January 1997, Week 5 January 1997, Week 4 January 1997, Week 3 January 1997, Week 2 January 1997, Week 1 December 1996, Week 5 December 1996, Week 4 December 1996, Week 3 December 1996, Week 2 December 1996, Week 1 November 1996, Week 5 November 1996, Week 4 November 1996, Week 3 November 1996, Week 2 November 1996, Week 1 October 1996, Week 5 October 1996, Week 4 October 1996, Week 3 October 1996, Week 2 October 1996, Week 1 September 1996, Week 5 September 1996, Week 4 September 1996, Week 3 September 1996, Week 2 September 1996, Week 1 August 1996, Week 5 August 1996, Week 4 August 1996, Week 3 August 1996, Week 2 August 1996, Week 1 July 1996, Week 5 July 1996, Week 4 July 1996, Week 3 July 1996, Week 2 July 1996, Week 1 June 1996, Week 5 June 1996, Week 4 June 1996, Week 3 June 1996, Week 2 June 1996, Week 1 May 1996, Week 5 May 1996, Week 4 May 1996, Week 3 May 1996, Week 2 May 1996, Week 1 April 1996, Week 5 April 1996, Week 4 April 1996, Week 3 April 1996, Week 2 April 1996, Week 1 March 1996, Week 5 March 1996, Week 4 March 1996, Week 3 March 1996, Week 2 March 1996, Week 1 February 1996, Week 5 February 1996, Week 4 February 1996, Week 3 February 1996, Week 2 February 1996, Week 1 January 1996, Week 5 January 1996, Week 4 January 1996, Week 3 January 1996, Week 2 January 1996, Week 1 December 1995, Week 5 December 1995, Week 4 December 1995, Week 3 December 1995, Week 2 December 1995, Week 1 November 1995, Week 5 November 1995, Week 4 November 1995, Week 3 November 1995, Week 2 November 1995, Week 1 October 1995, Week 5 October 1995, Week 4 October 1995, Week 3 October 1995, Week 2 October 1995, Week 1 September 1995, Week 5 September 1995, Week 4 September 1995, Week 3 September 1995, Week 2 September 1995, Week 1 August 1995, Week 5 August 1995, Week 4 August 1995, Week 3 August 1995, Week 2 August 1995, Week 1 July 1995, Week 5 July 1995, Week 4 July 1995, Week 3 July 1995, Week 2 July 1995, Week 1 June 1995, Week 5 June 1995, Week 4 June 1995, Week 3 June 1995, Week 2 June 1995, Week 1 May 1995, Week 5 May 1995, Week 4 May 1995, Week 3 May 1995, Week 2 May 1995, Week 1 April 1995, Week 5 April 1995, Week 4 April 1995, Week 3 April 1995, Week 2 April 1995, Week 1 March 1995, Week 5 March 1995, Week 4 March 1995, Week 3 March 1995, Week 2 March 1995, Week 1 February 1995, Week 4 February 1995, Week 3 February 1995, Week 2 February 1995, Week 1 January 1995, Week 5 January 1995, Week 4 January 1995, Week 3 January 1995, Week 2 January 1995, Week 1 December 1994, Week 5 December 1994, Week 4 December 1994, Week 3 December 1994, Week 2 December 1994, Week 1 November 1994, Week 5 November 1994, Week 4 November 1994, Week 3 November 1994, Week 2 November 1994, Week 1 October 1994, Week 5 October 1994, Week 4 October 1994, Week 3 October 1994, Week 2 October 1994, Week 1 September 1994, Week 5 September 1994, Week 4 September 1994, Week 3 September 1994, Week 2 September 1994, Week 1 August 1994, Week 5 August 1994, Week 4 August 1994, Week 3 August 1994, Week 2 August 1994, Week 1 July 1994, Week 5 July 1994, Week 4 July 1994, Week 3 July 1994, Week 2 July 1994, Week 1 June 1994, Week 5 June 1994, Week 4 June 1994, Week 3 June 1994, Week 2 June 1994, Week 1 May 1994, Week 5 May 1994, Week 4 May 1994, Week 3 May 1994, Week 2 May 1994, Week 1 April 1994, Week 5 April 1994, Week 4 April 1994, Week 3 April 1994, Week 2 April 1994, Week 1 March 1994, Week 5 March 1994, Week 4 March 1994, Week 3 March 1994, Week 2 March 1994, Week 1 February 1994, Week 4 February 1994, Week 3 February 1994, Week 2 February 1994, Week 1 February 1994 January 1994 December 1993 November 1993
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