Parkinson's Disease Tulip


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Old 02-10-2008, 09:53 PM #1
Virginia Therese Virginia Therese is offline
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Default Help!!!

It will probably seem as though I'm "beating an old horse to death"with my question related to Sinemet CR...but I am just not able to come to any real conclusion about how good the CR is vs. the "regular" Sinemet, i.e., do most of you find that the CR works better ALONE (w/no "regular" Sinemet?)..do most of you find that the "regular" Sinemet works better...do most of you feel that the combination of the two works best. I realize it's different for everyone, but in reading the responses that I have received, I still am not quite certain as to the efficacy of one over the other. Then, too...would you please comment on Brand vs. generic Sinemet CR. I have read that the generic is NOT equivalent in that it has only 75-80% active ingredient in the "regular" Sinemet. Inadvertently, the pharmacist filled Doreen's prescription for the CR w/the generic. I remember, too, that at one time, she was given the generic Sinemet and she did not fare as well on that so that I'm wondering if the same might be true of the generic CR.
At any rate, I would appreciate...once again...your responses to this "new"-"old" topic. Thank you so much.

Therese
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Old 02-11-2008, 12:18 AM #2
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In my particular case, generics dont work as well as brand name..Ive also noticed that there are different generic companies that make the CR..The regular generic Sinemet 25/100 made by TEVA doesnt work at all for me..I am using generic CR 50/200 because the brand name was on back order, and I called two phamacys..The generic CR works almost as good as the brand name, and is cheaper

I would suggest that you go with the brand name to remove all doubt about generics

As for what to use..how to use/dose it..CR vs regular?..You have to experiment to see what works best..Some guidence from the Dr, and experienced parkies certainly helps..We are all different, and that can make the process frustrating, so your question of what works better, regular, or CR will differ from person to person..CR works better for me than the regular, and I only need two doses per day for my pd
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Old 02-11-2008, 12:46 AM #3
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Default generic etc...

I had no luck with the generic. I have used the Cr and the regular and the CR works best for me because of how my body metabolizes the drug. All you can do is try each one (and I would just use one type exclusivley until you really understand how it works in her system) Keep a diary...how long it lasts, how fast does it kick in? Overlap time needed to maintain a steady flow to the brain. What food she eats and when in relation to her sinemet dosage and type. I'd give each one at least a month of trial. Some people take a little of this and a little of that. I used to do that but it just gets tooooo many pills to manage, and unless you know what each one will do in any given situation, you are playing a guessing game. Not a very fun one either. Trial and error, keep a diary and be very meticulous about kereping it. We are all different, and to complicate things, everything is slowly deteriorating and you have to make adjustments for all kinds of occasions...
I don't know why were not all crazy...maybe we are. the whole business of drugs is scary and there are no definite answers anyone can give you. Even the Neurologists have limited understanding of what is going on inside our heads and bodies. Sorry to be so unhelpful, we all understand your frustration and delemma. We grind away at our own versions of what your going through. Its all part of the package. When in doubt ...pray!
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Old 02-11-2008, 12:39 PM #4
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Default Thank You

Steve and Rosebud...for your replies to my post. What prompted me to write AGAIN about the Sinemet CR vs. "regular" Sinemet was that Doreen experienced a horrendous dyskinetic episode last evening...her entire body shook uncontrollably in a way that we had not seen in the past...extremely frightening for both of us. Approximately a week ago, her neurologist added another 1/2 Sinemet to her morning dosage (along with the Amantadine) PLUS 1/2 Sinemet CR twice daily which evolved into a medication regimen that added 1 1/2 more Sinemet daily...had been taking (6) 25/100 daily along with the 2 Amantadine daily.
This "episode" occurred with her last dose of "regular" Sinemet at 5 p.m. and it just seemed to me that logically, her body had "accumulated" too much Sinemet having gone from theoretically from 6 tabs daily to 7 1/2 tabs daily.
She contacted her neurologist early this morning (had been afraid to venture out to work until she spoke with him) and his assessment was the same as mine...too much Sinemet which he has reduced. He mentioned two possible options...eliminating the "regular" Sinemet entirely to be replaced by Sinemet CR ONLY (I presume to keep a constant/continual "flow" of Sinemet in her body. He had added the extra Sinemet precisely to see if it would help with the increasing tremor. I'm not exactly certain about the other option (was too upset myself to absorb what he had said), but I think he may be considering adding another Amantadine (that would be a total of 3 daily) because he has mentioned this in the past...but, if this could be avoided, both Doreen and her doctor wanted to avoid it. I asked Doreen which she would "prefer"...the tremor or the dyskinesia and, of course, "Mr. Moody" won that one...that's how the doctors at the National Parkinsons Foundation's site..."Ask the Doctors" refer to tremor!!! This certainly IS a designer disease, isn't it?
I keep saying that with all the medications "out there" there has to be a "right combination", but it seems that it's akin to looking for that "needle in a haystack"!!!

Again...thank you so much for your help...it's so appreciated.

Therese
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Old 02-12-2008, 12:51 AM #5
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Arrow dear therese

Sinemet CR
To break or not to break?

SIR,-A question posed in your "Credit for Learning" feature on neurology is whether breaking a Sinemet CR tablet is recommended. I recall reading in the article by Dr Burn (PJ, March 25, p476) that he stated that breaking the tablet disrupts the slow release mechanism. However, in previous personal communication with the manufacturer I have been advised that breaking the tablet has no effect on the slow release mechanism. It is important to clarify the position as I see patients who break a Sinemet CR tablet and appear well controlled.
For the benefit of all pharmacists could I ask, through your columns, that the precise position on the acceptability or otherwise of breaking Sinemet CR is clarified.

Chris Roome
Clinical Pharmacist, Royal Devon and Exeter Healthcare NHS Trust, Exeter

go to link for the correct answer!
http://www.pjonline.com/Editorial/20...ers/roome.html
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Old 02-12-2008, 02:42 PM #6
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Default therese

Therese..Im not an expert by any stretch of the imagination, but I would also agree that if the dyskenisia was worse, then the dose may be somewhat excessive..especially if there are not any symptomatic benefits associated with the Sinemet increase..The only other way around symptomatic benefits without the risk of dyskenisia, that I can think of regarding medications, is filling in the gap with Mirapex, or Requip, or some other pd med, and this of course depends on if the dopamine agonists that I just mentioned actually provide benefits..Mirapex and Requip have their own set of potential side effects as well..which of course differs from one person to the next..One patient for example may take Mirapex without any problem whatsoever..and yet another may become nauseous, or have unexpected sleepy episodes, or have compulsive behaviors, or a combination of the three..It usually is a process for all of us to find the right combination, because, again, we are all different

I have found that exercise and/or daily physical activity have helped me tremendously..I say this because, the weather has been lousy here lately, and I havent been able to get out and do the things I would like to do, and as a result Ive been experiencing some rigidity, especially over the past 3 weeks..It doesnt take long for me to stiffen up when I become idle
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Old 02-12-2008, 04:09 PM #7
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Default post traumatic dxd syndrome

shalom dear therese,

all of any kind of patient - PD etc... are in shock at the diagnosis,
especially when the doctor adds the post script -there is no cure...
comparable to what the used to call "shell shocked during WWII

a patient feels like so much is happening around them -they could
suffer very much in the mind body and spirit, and when we have no balance
in our life - we must find our center, and balance

their our memories in the tissues of DNA -of pain etc...
we are not just a body, or a brain -we have a spirit inhabiting the mud body and brain - earth suite is what I called it...

at least she can lean on you...

http://www.med.unc.edu/wellness/main...r%20memory.htm

http://www.candacepert.com/
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Old 02-13-2008, 12:08 PM #8
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Default Thank You, Again

Tena and Steve...

...and Steve...Doreen has taken Mirapex in the past with excellent response...EXCEPT that she developed the compulsive behavior to the extreme and had to discontinue its use. However, she was taking the maximum dosage, i.e., 4.5 mg daily. It has been my contention and, indeed, my intention, now, to discuss with her neurologist prescribing Mirapex but at a lowered dose (Ms. Arrogant, here...wanting to inject my own ideas on this!)...but, I know how well Mirapex worked for Doreen's symptoms so my "next plan" (lol) is to "suggest" to remind her neurologist of Doreen's excellent response to Mirapex (excluding the OCD factor) and to "politely" and tactfully "suggest" that she be able to re-introduce the Mirapex at the lower dosage...perhaps still taking the Sinemet (at even a lowered dose) which just may work well in eliminating/alleviating the dyskinesia(s). It all just seems so logical to me, but, I'm not the doctor...BUT I am Doreen's carepartner...I have seen what "works" and what does "not work" so that I feel that I am not "out of line" with making some suggestions to her neurologist. Of all people...I am the one who witnessed first hand the terrible OCD that occurred while Doreen was taking the Mirapex at the maximum dose so that one might think that I would be the one to object to its use..but, I just feel that a trial, combining the lowered dosages of both the Sinemet and the Mirapex is worth the "risk". Certainly, I'll be well aware of what's happening IF the Mirapex (even at the lowered dose) even gives rise to a hint of OCD. At any rate, this has been my "next plan of attack" so that your message, Steve, kind of supports me in what I have thought might work well for Doreen. I'll tell the neurologist that "even Steve agrees with me"...LOL!!!!

Thank you both, again, for your input..and for your patience with me on this topic.

Therese
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Old 02-13-2008, 02:44 PM #9
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Quote:
Originally Posted by therese View Post
Tena and Steve...

...and Steve...Doreen has taken Mirapex in the past with excellent response...EXCEPT that she developed the compulsive behavior to the extreme and had to discontinue its use. However, she was taking the maximum dosage, i.e., 4.5 mg daily. It has been my contention and, indeed, my intention, now, to discuss with her neurologist prescribing Mirapex but at a lowered dose (Ms. Arrogant, here...wanting to inject my own ideas on this!)...but, I know how well Mirapex worked for Doreen's symptoms so my "next plan" (lol) is to "suggest" to remind her neurologist of Doreen's excellent response to Mirapex (excluding the OCD factor) and to "politely" and tactfully "suggest" that she be able to re-introduce the Mirapex at the lower dosage...perhaps still taking the Sinemet (at even a lowered dose) which just may work well in eliminating/alleviating the dyskinesia(s). It all just seems so logical to me, but, I'm not the doctor...BUT I am Doreen's carepartner...I have seen what "works" and what does "not work" so that I feel that I am not "out of line" with making some suggestions to her neurologist. Of all people...I am the one who witnessed first hand the terrible OCD that occurred while Doreen was taking the Mirapex at the maximum dose so that one might think that I would be the one to object to its use..but, I just feel that a trial, combining the lowered dosages of both the Sinemet and the Mirapex is worth the "risk". Certainly, I'll be well aware of what's happening IF the Mirapex (even at the lowered dose) even gives rise to a hint of OCD. At any rate, this has been my "next plan of attack" so that your message, Steve, kind of supports me in what I have thought might work well for Doreen. I'll tell the neurologist that "even Steve agrees with me"...LOL!!!!

Thank you both, again, for your input..and for your patience with me on this topic.

Therese
Yes!..Tell the Dr that you know me..

How about Requip?..Has she tried it yet?..I "think" the risk of compulsion is less, but the nausea can be a problem..It was with me anyway..From what I understand, Mirapex is the new improved Requip

Just a thought
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