Mario,

As has been stated many times on this list before, each person's reaction to medication can be different.  To me, 9 tablets of Sinemet each day seems very extreme.  However, in your particular case, and under your doctor's direction, this may be the right dosage for you.

My mother was initially taking two 25/100 Sinemet tablets, along with six tablets of .05 mg Permax (.3 mg) per day.  She did well on this amount for over 2 years.  After this time, and along with her neurologist's input, we began to slowly wean her down on Permax.  We now have her taking:

Time      Mediciation                  Dossage

9am        Sinemet CR 25-100       one tablet
3pm        Permax                           .075 mg
9pm        Sinemet CR 225-100     one tablet
               Tylenol PM                    two tablets
3am        Permax                           .075

We find that the Tylenol PM at night time seem to help relax her and give her comfort from the diskinesia that comes around that time.  For times that her muscles cramp extensively, we give her 2mg of Diazepam (Valium).

We initially gave her the Permax at the same time as the Sinemet CR.  She would wake up around 2 or 3 am and not be able to get back to sleep till 7 or 8 in the morning.  By altering the times and giving her the Permax separately(usually when she wakes to go to the bathroom), 6 hours after the Sinemet, she can now sleep for up to 5 hours at a time.

I dont understand how this works, I just know that in her particular case it does - that old trial and error procedure has helped us immensely.

Like I said earlier, each person is different - 9 Sinemet per day in my mom's case would certainly be overkill and who knows what toxic effects it would have.  However, in your case, it must work for you.

Remember, we arent doctors, and we should all check with our neuros first.

Just my personal Sunday morning 2 cents worth.

David
my mom's caretaker, 69/diag @64
 
 

Hello Mario,  to save myself endless repetition I  wrote everything I knew
about  levodopa in an article which you can read by accessing the Web site
given below.  (It also has many other articles  of interest to PWP.
I would say that all you have learned so far is that your neurologist does
not understand the most basic rules about treating  PD. That is, the
effective life of a Sinemet tablet..: The hard fact is that no matter  what
you do  or how you try, your  single sinemet tablet will take 30 to 40
minutes to begin to affect the brain  ,it will then last about 2 hours,
and will then cease to be effective. Nothing can be done to lengthen this,
(That is not quite true- a new class of drug exists called COMT inhibitors
which block an enzyme which normally exists to break down Dopamine.  These
new drugs are heavy stuff, and should not be used simply to get a bit more
time out of a tablet.)

 As far as I am concerned my target is to be 'ON' from the time I wake up
to the time I go to sleep : Say 18 hours. In my case a tablet lasts 2 hours.
Thus I need 9 tablet taken every 2 hours to get the effect of one tablet
through the entire day.

I firmly believe that the brain is given a much smoother and less stressful
life if it is exposed to a controlled, steady flow of levodopa rather than
the 'on again- off- again' exercise resulting from incorrect chaining of the
tablets.

Now is the time to think about what dose size is appropriate: using the
tablet which you have as an example, it holds a nominal 100mg, and has a
life of 2 hours giving a rate of 50mg per hour. This is a good starting
point foor most people to try. DO NOT make your next step one where you
add another nine tablets on top of the baseline layer. that is a gross
step. Instead, you should proceed in small steps, using low- value tablets
and break pieces off them.

The above suggestions are simply intended as a guide, showing up the key
factors. I would be fascinated to hear  the comments of one of those people
such as the person who advised Mario, and to see if they are impervious  to
logic.

In summary, your symptoms are typical of underdosing, and I don't believe
there is anytthing more sinister going on than that.
Regards,

--
Brian Collins  <[log in to unmask]>  (60/39/34)