At 04:23 AM 3/7/2003 -0600, you wrote:
>Niwana
>
>On Thursday, March 6, 2003, at 10:26 PM, NMartin wrote:
>
>>Don
>>
>>Thought I understood in reading Dr. Lieberman's site that Sinemet
>>could not
>>come in patch form.  But if it does, I couldn't think of anything
>>better for
>>the moment.    I'm doing the trial study with the  Rotigotine Patch,
>>but
>>that keeps me up a couple of extra hours in the night.   However it's
>>better
>>than Comtan or Mirapex for me.
>The person who told me about the patch is under a non disclosure
>agreement.
>I  do not know to much more about it other than just that testing is
>finished.
>
>>Would you mind if I ask how long you've been diag and quantity of
>>Sinemet
>>daily.   I feel my Sinemet dose is too high.  It's double what it was
>>before
>>I went off of most drugs in preparation for the trial study.
>>Currently I
>>take 20-22 tab (reg 25/100).    In the past the Sinemet CR made my
>>dystonia

Doesn't that much Sinemet cause  rather serious dyskinesia?

>>more painfu My neurologist, who is quite qualified,  isn't worried
>>about
>>it much.    Thanks for anything you can share. l.
>I take 2-25/100 every four hours and 200 mg comtan to stretch this
>amount  of sinemet  as it runs out in 3 hrs 15 minutes (approx).  0r
>12- 25/100's and 6 comtan  every 24 hrs. Diagnosed 5 years in April.
>There was a CG or PWP  I can't remember which who was from England,
>just as I got diagnosed 5 years ago,  who had  calculated on his
>website and had a theory on how much sinemet a person should need
>through a number of factors . Maybe some of the longer list members
>know  more about this. I was quite new at the time on the list and was
>trying to get over all the denial by refusing to take meds, I got a
>real quick instant education from the  people on this list.  In my
>opinion I think that probably a great majority of PWP's are either over
>medicated or under medicated.  Here in Canada and I stand to be
>corrected you can get sinemet in 25 or 50 x100/200 and  CR.  The
>question that I have asked to many MDS Neurologists'  is what happens
>if a PWP at any stage only needs 18  not 25 or needs 42 not 50.   I was
>told  25 can be cut in half with a pill cutter to make 12.5 .  However
>what happens when that constant amount required  is out of range  of
>12.5, 25, 37.5, 50,  etc.   and the PWP has very painful dyskensias
>from getting to much sinemet to soon?  How can one person be calculated
>  to need exactly the same dose  for example  for 4 hrs. as another; if
>one person is 6 feet tall 225  lbs  very active vs another person 5
>feet tall and 98 lbs has a sedentary lifestyle.  Thats why I think the
>patch could be better at metering out a constant required amount.  I
>know of some PWP's who have to use liquid sinemet (crush the pills with
>juice as sinemet is not water soluble and sip  as required) as in pill
>form it just doesn't work appropriately for them.  I think that since
>there is no competition with sinemet as there is no other drug
>discovered equal to it that perhaps the drug industry  has been quite
>complacent in coming out with variation level dosages,  liquid form,
>patches etc.   I had hoped that  even I would have had some other
>options,  for  example, two nites ago as I  was Chairman of a Community
>Forum.  Due to stress involved my 4 PM meds ran out at 6:30, half an
>hour before  the forum started 7 PM. When I took my meds at the 8 PM
>break they refused to kick in till 9:30 PM after the forum was over.
>Let me tell you being OFF is pure hell in public when two groups of
>people have very different opinions on the same issue..  I own my own
>business and its not well known in the community that I have PD+ MSA.
>I found out very quickly is was not very advantages for the business
>when the  people know the owner is ill, but that's a whole other topic
>for discussion.  When diagnosed with " maybe PD" in 1998  by a GP
>doctor first, even I did not have one clue what this disease was about.
>  In 48 years, I had never heard of it, no other family member ever had
>it, never was able to distinguish anyone who had it publicly, even if I
>would have I would have only known that that person was different i.e.
>had a visible tremor, shuffled , etc. but not necessarily could tell
>that he/she had PD.  In the last few years finally  there has been
>quite a bit of publicity come out on this disease.  Hopefully that
>publicity will encourage the  drug company to come out with a better
>constant way of dispensing  Sinemet , other than pills with very few
>stringent levels so that we can maintain a greatly improved quality of
>life longer than we do now.  Our choices for a decent quality of life
>are still very limited  with Sinemet and the other quality of life
>option if Sinemet is no longer effective of DBS.
>>  My neurologist, who is quite qualified,  isn't worried about
>>it much.
>Statements like that that he/she is not worried about your dystonia
>bother me greatly as a PWP. To me it sort of says hey your in pain but
>what the heck you have PD. They are supposed to be able to give us a
>better quality of life by some means not just say live with it. I guess
>I expect a lot more from them then just ignoring some side effect which
>they consider to be minor that's making your life  real miserable.  I
>tell my Doctors from time to time that when they say,  well its painful
>but live with it, that what they just said  is totally unacceptable  to
>me that sure makes them stop in their tracks and they do some real deep
>thinking about other options in a real hurry.   I do hope your
>neurologist is a MDS neurologist.
>BTW I am NOT a Doctor so these are only my personal observations and
>opinions.
>
>Don
>54/5 PD+MSA
>
>>Niwana
>>
>>
>>----- Original Message -----
>>From: "Donald Diswinka" <[log in to unmask]>
>>To: <[log in to unmask]>
>>Sent: Thursday, March 06, 2003 7:53 PM
>>Subject: Re: Night-time rigidity
>>
>>
>>>Riverwater
>>>
>>>I use an alarm which wakes me at 12 midnite, 4 am, 8am to take regular
>>>doses of sinemet and comtan.
>>>Therefore my body gets equal dosage 24 hours a day every four hours.
>>>I
>>>would guess a lot of us wake up in pain to turn over cause the body
>>>for
>>>whatever reason  refuses to turn itself over. The continuos medication
>>>regime I am on does not turn me over when I should but allows the pain
>>>to wake me  and keeps me mobile enough that I still can turn over
>>>myself. This also makes me mobile  with minimal rigidity when I get
>>>up.
>>>The Sinemet Patch is coming very soon I was told! Yes it would be nice
>>>to go to bed before midnite and sleep till 8 am just once in a while.
>>>
>>>Don
>>>54/5 PD+ MSA
>>>
>>>On Thursday, March 6, 2003, at 10:29 AM, Riverwater wrote:
>>>
>>>>Does anybody know a way to get Sinemet into me
>>>>continuously throughout the night? (A PATCH????)
>>>>
>>>>I've had PD for almost 14 years (51 years old now) and
>>>>I've had to get a live-in because I awake in the night
>>>>totally unable to roll over or move in bed.
>>>>
>>>>
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