Hi Eileenpatricia
I am pleased you found the info useful and wish you all the luck in the world to find the right regime for you.
I am surprised no one else seems to have been told to try this way of adjusting dose/times as it seems so logical!
As I said, it does take a few weeks of methodical dosing and record-keeping but it was well worth it!
Love
GG
Hi EileenP
Out of curiosity what dose of sinemet are you taking?
L
Hi EileenP
Out of curiosity what dose of sinemet are you taking?
L
GG
There is some good info regarding Sinemet and all PD drugs on WWW.drugs.com.
The following statement is taken from the site and is also included on the Merck leaflet:
"The optimum daily dosage of SINEMET must be determined by careful titration in each patient."
If this is done correctly then there should be no need to reduce the dose, similarly I know of a number of PWP who have been titrated up to a set "limit" when they are suffering from under medication. In one case the PD nurse is at odds with the neuro as she believes the dose is to low.
It seems to me there is a lack of consistency in prescribing and administering PD drugs.
Since we have no control over the prescribers of our medicine I can only suggest individual PWP ask more questions regarding their treatment.
Leyther
What our neuro was saying is that the PWP is the prescriber...by working out the dose and gap between doses by observation of the symptom relief.
He placed the onus on us to arrive at the best regime and we benefited enormously.
I agree PWP need to ask questions and play a full role in working out the best med regime, the doctors can guide but not take all the responsibility.
Each must find the best way forward for themselves as we are all different.
Best wishes
GG
This is the second time my post has disappeared. and this site wont let me t paste from a previously prepared document
When I can summon up the energy I will elaborate on the folllowing:
Leyther. I had come to the conclusion that the one and half doses (150 mg) I was taking were causing diskinesia
.rather than necessarily the 500 mg total (neuros recommended max.) I am on through the day
Best wishes Paddy. t
Hi Paddy
Thanks for that.
150mg seems to be about the limit before Dyskinesia becomes a problem, the PWP I know are on 200mg. Adding entacapone seems to make a difference too when matched with high single doses or smaller but more regular doses eg every 2 hours. Entacapone causes me to contort my foot and my upper body and arms become rigid, then suddenly I relax and stretch and I am "on" but this is only temporay and hasn't developed further.
Another thing I noticed with sinemet is I sometimes "kick out" just before falling asleep, entacapone made this more regular. Its called a hypnic jerk (and something else too but I cant remember ) but its not dyskinesia.
Also sometimes swaying occurs which again seems to be related to entacapone. I find it goes away once the pills kick in. Anyone worried about Dyskinesia is best getting it checked out by their medical team just to make sure it is that before any radical changes are made.
regards
Leyther
PS Sinemet is the drug I take but I assume the problems are similar for any of the levadopa based drugs unless of course you know different.
