Greg:
If your Dad is doing so poorly I'd try another Dr.
It's not that he's doing poorly - I just believe that this is one of the
battles that PWP must face. Unfortunately he doesn't have anyone physically
around him to observe him / keep the much needed daily journal / etc. So, I
do what I can with the info I get or while visiting my parents.
The med mix he's taking sounds bizarre to me. What good can 1/4 tab of
sinemet really do? Think about it. A 1/4 tab of sinemet 25/100 is 6.25/25 !
Sinemet CR is not suppose to be broken according to manufacturer. I just
read an article by Dr. Iacino in CA which stated the standard gauge for
sinemet is about 1- 25/100 tablet per year of PD.
Of course everybody is different, and this is just my lay opinion. Talk to
his Dr. and make some demands on him. Something is not right.
Greg
47/35/35
Subj: Re: Sinemet Savvy Members (formerly Re: freezing)
Date: 6/19/00 3:00:48 PM Pacific Daylight Time
From: [log in to unmask] (Ron Vetter)
To: [log in to unmask] (Cari Barrett)
http://www.ridgecrest.ca.us/~rfvetter/levodopa.pdf
this Adobe Acrobat file has a lot of info you might peruse.
--
Ron Vetter 1936, '84 PD dz
mailto:[log in to unmask]
http://www.ridgecrest.ca.us/~rfvetter
Subj: Re: Sinemet Savvy Members (formerly Re: freezing)
Date: 6/19/00 5:29:01 PM Pacific Daylight Time
From: [log in to unmask] (Ivan M Suzman)
Hi Cari,
^^^^^^ WARM GREETINGS FROM ^^^^^^^^^^^^ :-)
Ivan Suzman 50/39/36 [log in to unmask] :-)
Portland, Maine land of lighthouses 69 degF :-)
********************************************************************
I am in my 15th YEAR of PD, like your dad - so here are a
few ideas that I hope may help you----
They are interlaced with excerpts of your original text, below.
Ivan Suzman 50/39/36
On Mon, 19 Jun 2000 16:04:33 EDT Cari Barrett <[log in to unmask]>
writes:
1. we are always trying to balance out the dyskinesia with the
Tasmar/Sinemet 25-100
Cari, You can try cutting the Tasmar down to 50 m per dose,
by splitting the 100 mg tablets with a pill-cutter. I do--it helps
avoid dyskinesia.from the-too-strong 100 mg.he takes now. It's
justa hunch I have from having used Sinemet, SInemet CR 25/100
and Tasmar (and Eldepryl) jointly for two years and 4 months.
>
> 2. he has an extremely hard time (usually) getting up in the
> morning,
CARI, have you tried giving your dad Sinemet or SInemet CR
after 5 PM?? His body will require some dopamine throughout
the night. I am pretty sure that this will reduce his morning
difficulties.
FInd out if your doctor will agree to prescribe at least one or two
more doses of Sinemet and Sinemet CR after supper. Looks very much
to me like 8 PM and maybe 11PM doses could help your dad tremendously.
I take 9:30 PM, after-midnight and 3:45 AM doses. Otherwise.
I would be TOTALLY frozen up by morning!
>
> 3. We are considering the CR 25-100 now that you all told me
> exists, but haven't done it yet - as we realize that 1/2-ing and 1/4-ing
the CR
> is insane - but if he takes 1/2 CR at 9a for several days - he's totally
hyper and
> out of control until the evening -
>
> if he takes 1/4 CR at 9a for several days (during our "trial periods") he
can
> hardly get out of bed at all, has little or no energy and can barely
> speak -
Loks like he needs more than 1/4 (more than 50 mg), but
less that 1/2 (less than 100 mg) If you try to guess, maybe 75 mg
per dose would be bettert: 3/4 of a 25/100 CR, each dose.
>
> anyway - i wish i understood better AND would appreciate a
> RE-DIRECTION to whatever chart that is that helps you figure out the
"lifespan" of
> the Sinemets (3 hrs with CR, etc...)
>
> thanks -
> Cari
> daughter of Dempsey-PWP (71/16+)
> & Jo Ann-CGiver
From: [log in to unmask] (Ron Vetter)
> I take a half 25/100 Sinemet around 7 AM to "help me come alive"
>> then I take some breakfast
this sequence is not best choice. the pills should all be taken 20 to
30 minutes before the breakfast
> and then I take the rest of the cocktail -
>> 25/100 Sinemet CR, 1 MG Mirapex, 200 MG COMTAN, 5 MG Eldepryl.
>>
>> Problem is: 9 AM comes around - time to drive to work - and I am still
>> as dyskenetic
perhaps you are dyskinetic; but, it seems unlikely. bradykinesia is
slowness of movement. each of the medicines has a halflife and is
absorbed to reach a peak concentration, then decays in concentration
(CR versions differ a bit); so, it takes a different time to become
effective.
> and clumsy as when I get up. So, what I do is I take
>> a half a XANAX and bada bing, 45 minutes later when I get to work I am
>> OK, although I drive a bit anxious.
>>
>> Question: Am I undermedicated? Why does XANAX seem to work?
--
Ron Vetter 1936, '84 PD dz
mailto:[log in to unmask]
http://www.ridgecrest.ca.us/~rfvetter
From: [log in to unmask]
Sounds as tho many of us are having a few problems right now. Harry fell on
the beach yesterday. Was crossing a patch of sand with standing water. He
really went down hard and of course couldn't get up at all. Three people
rushed to his rescue, I was about a block down the way. They got him up but
he was trembly, had a bad night and says this morning he is weak and sick.
Nothing specific, no physical pains.
Our neuro doesn't like sinemet CR and it's been so long since Harry was on
it, can't remember why. Harry seems way on the high side for sinemet which
disturbs me about moving him from 7 to 9, got him in real trouble with
hallucinations before.
Don't y'all feel that the doctors are often in the dark as much as we?
Seroquel is so new and comtan is new in this country. Seroquel certainly
seems to help keep away the crazies, at least has so far here, but our neuro
has hesitated to add comtan because in some cases seems to bring back
hallucinations, dementia.
Wish I had some encouragement, words of wisdom to help on the list but aren't
we lucky to have a place to go just to air it all out.
Juanita, wondered if you had ever tried 1and a half sinemet more frequently
than 2 at a time five times per day. Don't want to appear to be Doctor Peg
but 2 at a time seems to be a pretty big jolt, with enough time between that
towards the end of the period you might be getting a wearing off effect.
Just a thought for you to maybe run past the doctor.
Have decided the really best thing would be to pop all the pwp's into respite
and all the cg's go away on a cruise. Any volunteers for trip planner? Hugs
from Peg
----- Original Message -----
From: "Cari Barrett" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Monday, June 19, 2000 4:04 PM
Subject: Sinemet Savvy Members (formerly Re: freezing)
> Pamme -
> best of luck with your own health - I still don't understand why CGivers
> aren't automatically given a Certificate of Excellent Health upon joining
the
> CGiver's club! doesn't make sense, but. . .
>
> I DO want to re-address a question I keep having - and I send this out to
the
> Sinemet Savvies out there -
>
> In the constant quest of finding the best combination of sinemet, agonists
> and timing - I don't understand how so many are taking full doses of Sinemet
> 25-100 and CR 50-200 repeatedly during the day - while my dad, after 15
years
> (AND, remember this is the guy whose doctor said he's at the "End"...)
>
> is only taking -
> Sinemet 25-100
> 1/4 6a, 9a, 2p,5p
>
> CR 50-200
> 1/2 6a
> 1/4 9a, 2p, 5p
>
> Permax 1mg
> 1 6a, 11a, 2p
> Tasmar 100 mg
> 1 6a, 11a
>
> 1. we are always trying to balance out the dyskinesia with the
> Tasmar/Sinemet 25-100
>
> 2. he has an extremely hard time (usually) getting up in the morning, so
> chews up his 6a 1/4 Sinemet 25-100
>
> 3. We are considering the CR 25-100 now that you all told me exists, but
> haven't done it yet - as we realize that 1/2-ing and 1/4-ing the CR is
insane
> - but
>
> if he takes 1/2 CR at 9a for several days - he's totally hyper and out of
> control until the evening -
>
> if he takes 1/4 CR at 9a for several days (during our "trial periods") he
can
> hardly get out of bed at all, has little or no energy and can barely speak -
>
> anyway - i wish i understood better AND would appreciate a RE-DIRECTION to
> whatever chart that is that helps you figure out the "lifespan" of the
> Sinemets (3 hrs with CR, etc...)
>
> thanks -
> Cari
> daughter of Dempsey-PWP (71/16+)
> & Jo Ann-CGiver
>
Cari
daughter of Dempsey-PWP (71/16+)
& Jo Ann-CGiver
