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Some Suggestions & Web Sites (LONG)
Excerpts of original msg: Complete text at end.
-----------------------------------------
... first communication as a new member of this list...
I am 47 years old and was diagnosed with Parkinson's ...
> I presently use Sinemet 25/100 five times daily in combination (within the
> last
> few months) with 1 gram Mirapex three times daily. I'm not yet sure what
> effect, if any, the Mirapex provides, although the effect of the Sinemet is
> certainly dramatic. I have developed "variable response"
> syndrome with respect to the Sinemet. My neurologist whose
> subspecialty is Parkinson's) tells me that it would have been preferable not
> to
> have begun my treatment with Sinemet because of the possibility of developing
> > this very
syndrome-
I find that I need to use the Sinemet at no less than 3.5 hour intervals,
> which means significantly less function at night. I also find that I need to
> rest for about 30 minutes before each dose of Sinemet, which can be
> problematic.
Hello Rhonda and Welcome,
What I say, I say as a lay person with PD, who has had PD in my family for
generations. I've
done a lot of reading, but what I say is only my opinion based on
self-education, personal and
shared experiences. To that end, I'm also addressing this to a list member who
is an MD with
PD, "Charles T. Meyer, M.D." <cmeyer2@xxxxxxxx>. I urge you to talk to each
other in case I've
made any blunders. Having said that:
If I understand the problem, you are experiencing what is commonly called
fluctuations or on/off
periods (there's supposedly a distinction between these 2 terms, but we'll
treat them as being
the same), and what you call "Variable Response Syndrome," which I assume is at
least very
similar. Additionally, you need to rest during the day and take your Sinemet
close together to
get through the day, and, so, you are undermedicated at night, having taken
your daily dose of
Sinemet already. You are reluctant to increase it because of VRS, and I
assume, because you're
only 47 and wish to postpone Sinemet as long as you feel you can.
I'll list some possibilities that MUST be discussed with a Neurologist who is a
true Movement
Disorder Specialist (MDS) before you do anything on your own. I'm saying two
things here; first,
discuss therapy changes with a doctor, second, I'm urging you to seek an MDS
for another
opinion, because a Neurologist with a subspecialty in PD may not be the same
or as good as a
MDS.
If my description of the problems is correct, it seems to me that one strategy
may be to
potentiate and/or maximize* the Sinemet you're already taking, by
* increasing the carbidopa to at least 50: use 50/100 Sinemet, (see *
for details
later)
* increasing the Mirapex to try to further alleviate symptoms; if
you're resting
because the Mirapex makes you sleepy, and it often does, you might
want to
* switch to Requip. Requip also makes people sleepy and unlike the
nausea of
Sinemet sleepiness from agonists seems to be intractable. BUT, if
Mirapex makes
you sleepy, it does not mean that Requip will: the dosing and
strengths of these
two drugs are VERY different. I switched from Mirapex to Requip, and
I'm much
less sleepy, and it works just as well.
* adding a COMT-inhibitor such as Tasmar (see full suggestions in
following para.)
to stretch out your Sinemet dosing, and have some left for the
evening as well as
getting through the day.
* Details:
Take Sinemet in such a way as to maximize it's effect, as follows:
* take Sinemet on an empty stomach (30 minutes before a meal);
* reduce or eliminate intake of protein including dairy (have your greatest
source of protein
at night);
* take extra carbidopa--if you're experiencing nausea from the Sinemet, and
are therefore
taking it with food, you can take additional caridopa (Lodosyn-sp?) up to
200mg daily; this
increases the amount of Sinemet to the brain, and reduces it in the
periphery, which is
what makes one nauseous.
* try increasing Mirapex. This is sometimes tough, but, could lead to
reducing Sinemet. If
you're having too hard a time tolerating Mirapex,
* you could try Requip. (Both are from the new, nonegorline-type
agonists-Requip being the
newest.) The dosing is very different, i.e., one takes up to about 4.5 mg
of Mirapex,
maximum, whereas, one takes up to 24 mg of Requip maximum--there's more
"wiggle room" or
opportunity to fine tune the dosing, if you will. It takes experimenting,
patience and
time, which is frustrating, may be difficult to do while you're still
practicing law full
time, and often does not sit well with doctors. But it's your life, and I
urge you to take
control of it, which I'm sure you are.
* potentiate the Sinemet with another adjunctive therapy, such as Tasmar
(which must be
monitored carefully, but can and does help some people, as long as they
are not at risk for
liver disfunction); this would perhaps maximize and/or spare the Sinemet
further.
Hope this helps. Good Luck!
I include a draft list of helpful web sites below: (Most are really good, but
they do differ in
content and value)
--
Charlotte Mancuso
***************************************************
For advocacy, medical, and other PD-related material, go to:
-----------------------------------------------------------------------------------------------------
DRAFT WEB SITE LIST
Great Archives:
* (Janet's web site)
janet paterson <janet313@xxxxxxxxxxx> ( e-mail Janet on how to get to
archives for
this listserv)
Parkinson's Information Exchange <PARKINSN@xxxxxxxxxxxxxxxxxxxx>
PARKINSN@xxxxxxxxxxxxxxxxxxxx
* John Cottinghams Homepage Archive
----------------------------------------------------------------------------------------
*
* Awakenings
* The neuro website at harvard is an excellent resource:(may have
changed/moved, but should
get you to it)
a psychosocial article is there along with an algorithm on
managing PD,
and some excerpts from the young parkinson's handbook and a
caregiver's
handbook
*
*
-------------------------------------------------------
Parkinson's Institute
Website:
Address: 1170 Morse Avenue, Sunnyvale, CA 94089
Phone: 408-734-2800 or 800-655-2273 (Canada) or 800-786-2978 (US) Fax:
408-734-8522
E-mail: outreach@xxxxxxxxxxxxxxxxxxxxxxx
An independent, not-for-profit organization conducting patient care and
research activities in the
neurological specialty area of movement disorders.
************
* Addresses for national PD organizations in the USA
NEW APDA address---
The American Parkinsons Disease association (APDA)
1250 Hylan Blvd., Suite 4B, Staten Island, NY 10305
(includes directory
of support
groups)
Fax: (718) 981-4399
E-mail: apda@xxxxxxxxxxxxxx
TOLL FREE: 1-800-223-2732 [1-800-223-APDA] National Office
To reach the nearest A.P.D.A. Information and
Referral Center
from any
location in USA, DIAL
TOLL FREE: 1-888-400-2732 ALSO:
APDA Young-Onset Information & Referral Center
2100 Pfingsten Road, Glenview, IL 60025
email APDAYPD@xxxxxxx
1/800-223-9776
*********
National Parkinson Fndtn.,Inc.
1501 N.W. Ninth Ave. , Bob Hope Road, Miami,FL 33136-1494
(800) 327-4545 e-mail: mailbox@xxxxxxxxxxxxxxxxx Fax: 305
548-4403
*********
Parkinson's Action Network - PAN
Website:
Address:840 3rd St
Santa Rosa, CA 95404
Phone: (707) 544-1994 or (800) 850-4726 Fax: (707) 544-2363
E-mail: info@xxxxxxxxxxxxxxxxxxxx
OR
Capitol area office:
1001 Pennsylvania Avenue, Suite 850 North, Washington, DC 20004
Phone: (202) 628-2079 Fax: (202) 737-4242
E-mail: pandc@xxxxxxxxx
A nationwide advocacy organization
*************
Parkinson's Disease Foundation - PDF
Website:
Address: 710 West 168th St. Third floor - New York, NY 10032-9982
Phone: 212-923-4700 or 800-457-6676 Fax: 212-923-4778
E-mail: PDFCPMC@xxxxxxx
OR
Midwest office:
833 West Washington Blvd., Chicago, IL 60607
Phone: 312-733-1893
United Parkinson's Foundation
NOW MERGED WITH THE PARKINSON DISEASE FNDTN.
***********
* National Institute of Health Research News Parkinson's Disease
Other NIH Sites:
https://www-commons.cit.nih.gov/crisp/
* AMA Publications
-------------------------------------
FULL TEXT OF ORIGINAL MESSAGE:
Hi. This is my first communication as a new member of this list or any internet
> exchange. I am 47 years old and was diagnosed with Parkinson's [snip]
>
> I presently use Sinemet 25/100 five times daily in combination (within the
> last
> few months) with 1 gram Mirapex three times daily. I'm not yet sure what
> effect, if any, the Mirapex provides, although the effect of the Sinemet is
> certainly dramatic. Unfortunately, I have developed "variable response"
> syndrome with respect to the Sinemet. My current physician, a neurologist
> whose
> subspecialty is Parkinson's) tells me that it would have been preferable not
> to
> have begun my treatment with Sinemet because of the possibility of developing
> > this very
syndrome--hence the experiment with Mirapex. (The Sinemet was
> originally prescribed by my current doctor's colleague, a well-respected
> neurologist whose subspecialty is multiple sclerosis.)
>
> I am a lawyer whose focus is civil litigation. In order to function during
> the
> day, I find that I need to use the Sinemet at no less than 3.5 hour intervals,
> which means significantly less function at night. I also find that I need to
> rest for about 30 minutes before each dose of Sinemet, which can be
> problematic.
> All of this makes professional life difficult. It is also a nuisance at home,
> where evenings are usually devoted to activities with my husband.
>
> Any thoughts for a newcomer about managing what must be a familiar scenario to
> most of you? Sorry for the long initial message and thanks in advance for
> your
> time.
>
> Rhonda
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