At 07:04 PM 2000/05/01 -0400,
i the interogator and bill the interrogatee wrote:
>>         I  am  currently  46  and  I was diagnosed four years ago.  My
>>      first neuro. put me on Sinemet 25/100 at two tablets  a  day.   I
>>      noticed no change in my symptoms.  My second neuro. put me on the
>>      same 25/100 at the same dosage of two tablets a  day.   Again,  I
>>      noticed  no  change  in my symptoms.  This doctor bumped me up to
>>      four tablets a day, but there were still no changes in  my  symp-
>>      toms.   My  third  neuro.  changed the prescription to Sinemet CR
>>      50/200 at two tablets a day, but (again) there was no  noticeable
>>      change in any of my symptoms.
>>
>>         My  current  neuro.  put me on three tablets of Sinemet 25/250
>>      per day.  And, this was the first time that  I  had  noticed  any
>>      change at all.  Some of the symptoms were actually reduced and it
>>      was noticeable.  But, also noticeable, was a major dyskinesia  in
>>      the  form of my head bobbing a lot when I was talking.  This neu-
>>      ro. then "bumped me down" to CR 50/200 at *four tablets a day* --
>>      and  we're talking about maybe pushing that up to five a day if I
>>      can find a way to wake myself at two in the morning........

-----begin re-run-----
my 'take' [i.e. my best guesstimate as a non-medico] on these two doseage
levels:

3x25/250IR = [Instant Release Sinemet]
75 mg available carbidopa
750 mg available levodopa

4x50/200CR = [Controlled Release Sinemet]
200mg carbidopa less 25% = 150 mg available carbidopa
800 mg levodopa less 25% = 600 mg available levodopa

these two doseage levels are the first ones you've had
that meet the suggested daily minimum dose of carbidopa
-----end re-run-----


oops
despite biil's charitable interpretation of my earlier missive
it was unintentionally truncated and completely un-replied-to
due to unintentional missage prior to completage

put it down to possible menomania combined with
much longer than normal off periods
when my meds do diddley
[and my brain seems to develop its own secret language]

my comment above:
>these two doseage levels are the first ones you've had
>that meet the suggested daily minimum dose of carbidopa
is not quite correct, on rea-reading,
but the daily amount of carbidopa could very well be 'the' factor
in your general symptomatic improvement
since it directly affects how safely the levodopa is transported to the brain

and it strikes me that
if your particular bio-physio-chemical metabolism 'likes' carbidopa
you might do even better on slightly more carbi and slightly less levo

maybe the appearance of dyskinesia at this fairly early stage
indicates that maybe you could get by on less levo
as long as its transportation safety is guaranteed by a strong carbi presence

maybe your earlier lower doses of sinemet weren't effective symptomatically:
because
although the levo amount initially might have been enough to do the trick,
[i.e. high enough to reduce or eliminate symptoms
but still low enough so as not to induce dyskinesia]
not enough of it made it to your brain unscathed by marauding enzymes;
in other words,
guarded by a strong enough contingent of the carbi-guardi-squad!

>>      ...Ever  since  I  can  remember, I have had tremors in my hands.
>>      Nothing major, but enough to keep me from doing any kind of  "de-
>>      tail"  work  with  my  hands.  Initially, my *symptom* was what I
>>      would have called a twitch in my right  arm.   And,  my  "normal"
>>      shaking had become more noticeable....
>>         About  a  month  or two after I noticed these symptoms, it had
>>      become bad enough to make me seek medical advice.  In addition to
>>      the  twitch,  the  neurologist  noticed that -- as I walked -- my
>>      right arm didn't swing as freely as my left....
>>         In  the last four years, I have had a variety of symptoms.  At
>>      times, I would notice that I would unconsciously clench my  hands
>>      tightly.  I also developed an ache in my shoulder, elbow, or fin-
>>      gers of my right arm.  A little later, I noticed that the muscles
>>      in  the  right side of my body would tense up.  And, on occasion,
>>      my vision would blur slightly or I would require  brighter  light
>>      to read smaller text....
>>         These  symptoms didn't always build on one another.  Sometimes
>>      one symptom would  fade  while  another  became  more  prominent.
>>      There  was no pattern -- no rhyme or reason I could detect.

i think all of these things
are fairly common indicators of pd's extremely slow progress
combined with our brain's amazing efforts to compensate - viz:
"full blown" pd symptoms don't usually manifest
until 80% of the dopamine producing cells in the substantia nigra have died off

>>      ...But,
>>      when recovering from an illness of any kind, the  tremors  seemed
>>      to  worsen....

i understand that this is pretty typical too

when i am 'coming down with' a cold or the flu,
either my symptoms run wild or my response to sinemet runs awol
[just like when my hormone levels are on the fritz]

>>      ...   And,  in  general, the symptoms seem to be at their
>>      worst in the morning but diminish a bit through the day into  the
>>      evening....

this could definitely be a response to your med schedule
and could very well be a direct reflection of your total sinemet intake
during the prior say six to eight hours

>>      ...   I have gone through a range of styles of tremors. What started
>>      out as a general shaking of the hands eventually changed into the
>>      classic  "pill  rolling"  tremor.  Then,  it  changed to a clasp-
>>      ing/grasping tremor. Either one was controllable  at  rest.  And,
>>      the  non-swinging arm stopped for a while and then changed into a
>>      raised-arm/clenching fist position on both sides.
>>         Eventually,  I  started  noticing  the "slowness of movement."
>>      Walking became harder and it would take quite a bit of effort  to
>>      do  simple things like walking the dog. And, getting into and out
>>      of cars and chairs became a real effort as well. I would have  to
>>      expend a great deal of effort using my arms to pull me out and up
>>      into a standing position....

this all sounds typically pd-ish to me
[and incidentally, typically pre-sinemet-ish as well]

the five major symptoms as now recognized are

1. tremor
2. rigidity
3. slowness of movement
4. balance problems
5. fatigue

i have never had [1] but always lots of [2]
which i used to sometimes confuse with [3]
i have noticed more problems lately with [4]
[this after 12 years since diagnosis]
and [5] seems to come and go

put five varied symptoms together in different proportions
with the normal variations in human bio-physio-chemical make-up
and
voila, you have the ultimate custom fit designer disease!
[none of that 'one-size-fits-all' nonsense here!]

>>      ...At the moment, on the 4 x 50/200 CR, the symptom that is still
>>      noticeable is the tremors.  I have  noticeable  tremors  in  both
>>      arms  and both legs.  As I remember, the off-Sinemet tremors were
>>      much worse than the current on-Sinemet tremors.  And, except  for
>>      the Sinemet-induced dyskinesia, these are the only symptoms I now
>>      notice...

one point of caution here
is that sinemet CR while perfectly well tolerated by lots of us
is known to cause aggravated dyskinesia in some of us
as compared to sinemet IR

e.g i can consume identical [useable] amounts of IR vs CR
and obtain equal symptomatic effects
but wildly differing dyskinetic side effects

[a thought just occurred:
i wonder if the carbidopa is 'controlled' at the same rate as the levodopa???]

>> > ...in what way were they reduced by the 3x25/250IR sinemet doseage? ...
>>      ...The  first  thing  I  can say is that I generally felt better.
>>      People who knew me and saw me regularly  said  I  looked  better.
>>      The  only symptom that I noticed -- as described above -- was the
>>      arm/leg tremors and the dyskinesia....

this certainly sounds like the sinemet is starting to do what it is supposed to do
it's probably 'just' a 'simple' matter of fine-tuning now...

but you 'tremor' types
tend to have have somewhat different results with sinemet
than us 'rigidity' types

>> > in what way were they affected by the 4x50/200CR sinemet doseage? ...
>>         The  tremors  worsened slightly -- almost imperceptibly.  But,
>>      in the year or more since I've been  on  this  prescription,  the
>>      tremors have gradually worsened again to be, IMO, more noticeable
>>      and getting harder to hide....

could be pd's 'progess'
['fine-tuning' is never done - just like house-work!]

>>      ... One  other thing, I do have on-times and off-times.  There are
>>      periods during the day when the tremors will all  but  disappear.
>>      While  at  other  times  they appear somewhat strong.  I have not
>>      been able to determine a schedule or cause/effect or any type  of
>>      pattern at all in these on/off times...

if you are getting into noticable 'on/off' times
it might be worthwhile keeping a detailed daily diary
[maybe with a quick shortform entry in it every half hour]
of your med/symptom/food/sleep routine for a week or two

this might very well help you and your neuro determine more exactly
where the hills and valleys of your sinemet 'coverage' are
and thus where some timing adjustments could be tried

>> > why does your neuro think a fifth 50/200CR
>> > would benefit you at the cost of interrupting sleep? ...
>>      ...*Our*  opinion  is  :-)  that in the period of time between my
>>      last dose at 6 P.M. and my first dose in the morning  at  6  A.M.
>>      that all of the Levodopa has been consumed or used.  So, it takes
>>      a long time in the morning to get the first (and maybe  the  sec-
>>      ond) to kick in and provide some relief.
>>         So the theory is that the 2 A. M. dose might provide a sort of
>>      "running start" for the 6 A.M. dose to make it more effective.

yep, it might do...
and then again, you might be heading to 'CR'-dyskinesia-disco territory as well...

better pd experts than me  [alan bonander, for one]
have long advocated a 'kick-in' starter tablet of IR for those on a regime of CR
specifically to address this problem

how you take your sinemet can also be a matter of 'fine=tuning'

if i take my IR with a sweet drink, preferably coke, as opposed to say plain water,
the kick-in is twice as fast

if i take CR tablets whole as recommended
after two days i invariably enter an uncomfortable state of dyspepsia / dyskinesia
[not a pretty sight!}

but
if i take a CR tablet by 'melting' it in my mouth
i obtain smooth symptomatic relief, with no dyspepsia and no dyskinesia
[go figure!]

i can obtain virtually identical results by sipping on a custom made sinemet-coke
[with IR tablets dissolved in it]


in closing,

1. we have to become our own best pd advocates

2. no one else can know our bodies like we do

3. titration must be low and slow or no go

4. we are all the same, but different

5. education/knowledge is power

6. to grok is to live

janet

janet paterson
53 now / 41 dx / 37 onset
a new voice: http://www.geocities.com/janet313/
613 256 8340 PO Box 171 Almonte Ontario Canada K0A 1A0