Charlie,
Thanks for your suggestions.
Bill
-----Original Message-----
From: Charles T. Meyer, M.D. <[log in to unmask]>
To: [log in to unmask] <[log in to unmask]>
Date: Friday, October 15, 1999 5:07 PM
Subject: Re: Some Suggestions & Web Sites (LONG)
RHONDA,
I agree with all of Charlotte's suggestions and would only add the
possibility of using Sinemet-CR which is a slow release form of the drug.
The most important part of the equation is your Doctor and I certainly
suggest a movement disorders specialist preferably in a setting where
research is done. The fact that your doctor says he specializes in PD does
not guarantee that he is trained in a movement disorders fellowship although
probably he has been. If he has a lot of PD patients probably he is OK IF
YOU ARE COMFORTABLE WITH HIM/HER.
I am a retired psychiatrist not a neurologist but I have had PD for 10 years
and have had both fetal transplant surgery (double blind) and bilateral STD
DBS surgery which has been helpful.
Charlie
----- Original Message -----
From: Charlotte Mancuso
To: Rhonda ; [log in to unmask] ; Charles T. Meyer, M.D.
Sent: Thursday, October 14, 1999 7:55 PM
Subject: 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." <[log in to unmask]>. 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
a.. increasing the carbidopa to at least 50: use 50/100 Sinemet,
(see * for details later)
a.. 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
b.. 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.
a.. 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:
a.. take Sinemet on an empty stomach (30 minutes before a meal);
b.. reduce or eliminate intake of protein including dairy (have your
greatest source of protein at night);
c.. 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.
d.. try increasing Mirapex. This is sometimes tough, but, could lead to
reducing Sinemet. If you're having too hard a time tolerating Mirapex,
e.. 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.
a.. 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:
http://www.onelist.com/subscribe/CurePD-NorCal
--------------------------------------------------------------------------
---------------------------
DRAFT WEB SITE LIST
Great Archives:
* http://www.geocities.com/SoHo/Village/6263/pienet/subs/ (Janet's web
site)
janet paterson <[log in to unmask]> ( e-mail Janet on how to
get to archives for this listserv)
Parkinson's Information Exchange <[log in to unmask]>
[log in to unmask]
* John Cottinghams Homepage Archive
http://www.ionet.net/~jcott/homepage/archive/103.html
--------------------------------------------------------------------------
--------------
* http://james.parkinsons.org.uk/search.htm
* Awakenings
http://www.parkinsonsdisease.com/
* The neuro website at harvard is an excellent resource:(may have
changed/moved, but should get you to it)
http://neuro-chief-e.mgh.harvard.edu/parkinsonsweb/Main/pdmain.html#mainmenu
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
* http://my.webmd.com/topic_summary_article/DMK_ARTICLE_40066
*
http://www.intelihealth.com/IH/ihtIH?t=333&st=333&r=EMIHC000&c=23462
5
-------------------------------------------------------
Parkinson's Institute
Website: http://www.parkinsonsinstitute.org/index.html
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: [log in to unmask]
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
http://www.apdaparkinson.com/ (includes
directory of support
groups)
Fax: (718) 981-4399
E-mail: [log in to unmask]
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 [log in to unmask]
http://members.aol.com/apdaypd
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: [log in to unmask] Fax: 305
548-4403
http://www.parkinson.org
*********
Parkinson's Action Network - PAN
Website: http://www.parkinsonsaction.org
Address:840 3rd St
Santa Rosa, CA 95404
Phone: (707) 544-1994 or (800) 850-4726 Fax: (707) 544-2363
E-mail: [log in to unmask]
OR
Capitol area office:
1001 Pennsylvania Avenue, Suite 850 North, Washington, DC 20004
Phone: (202) 628-2079 Fax: (202) 737-4242
E-mail: [log in to unmask]
A nationwide advocacy organization
*************
Parkinson's Disease Foundation - PDF
Website: http://www.pdf.org
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: [log in to unmask]
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
http://www.nhgri.nih.gov/DIR/LGDR/PARK2/
Other NIH Sites:
https://www-commons.cit.nih.gov/crisp/
http://www.nlm.nih.gov/databases/freemedl.html
http://www.nlm.nih.gov/medlineplus/
http://www.nlm.nih.gov/PubMed/
http://igm.nlm.nih.gov/
* AMA Publications
http://www.amapublications.com
-------------------------------------
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
