Quote:
Originally Posted by d0gma
There is a great deal of information stating that the effective life of CL is 5-8 years. It is my firm belief that it is more of an end stage drug and not a beginning stage drug. The honeymoon effect that a previous post referred to is the period of time during which it works well and does not have horrible side effects.
See http://parkinsons.bsd.uchicago.edu/progression.html
and google useful efficacy of sinemet etc to find more articles.
Before starting CL I suggest trying other drugs such as tremor blocking drugs, agonists, muscle relaxers (relieve rigidity) etc. The reason for this is that with longer use CL does start to cause Dystonia and Dyskinesia which can be more debilitating than the PD itself. Everyone is different.
In my case the doctor I worked with had me so overdosed that I was almost immobile. It turns out I didn't have PD at all and CL was causing all of my symptoms. Its very tempting to take more CL since you do feel better right away. Resist that temptation. Take as little as you can work comfortably with. Increases should be carefully considered. The more you take early on the more side effects you will have sooner. CL quits working as well and as long with time. You need more sooner to maintain. The more you take the worse your symptoms will be.
I really think many of the people taking CL are taking too much and starting too soon. It's hard if not impossible to stop. Search through stopping sinemet and see what some people have had to say. There are several people that have struggled to stop only to find it is very addictive and very dangerous to stop. Stopping the drug does endanger your life.
My hope is to encourage you to educate yourself on the role you want the drug to play in your treatment. It belongs in the later phases of treatment but many people are starting earlier to keep jobs, maintain families, and enjoy their lives which have been suddenly turned on end with diagnosis. You might want to save it to help you when you need it more (when you are older and more advance in PD). It does really help but many doctors use it inappropriately IMHO.
I've spent the last 3 years trying to get off sinemet. It's been no picnic and the price has been high. |
DOGMA,
i too suggest that one not take any more than you need OF ANY DRUG but i also think you should not be giving very specific advice on pd medications. everyone is different and the consequences of your giving the wrong advice and causing someone harm or to sacrifice quality of life because of some future side affects that may or may not occur can be significant.
i know many people that have done well for over 10 years on sinemet/stalevo and many that have done poorly on agonists and were afraid to even try sinemet and are much more disabled than they need to be. the more one knows about pd meds the better and thie personal experiences told on this board are valuable but were're not doctors, we don't know the medical history of the person involved or even if it is posted know if it's accurrate. i'm all for making suggestions but i am totally object to anyone judging sinemet based only on their bad experience with a doctor more than the drug itself it seems.
agonists are not recommended for people over 70 and when asked which would you prefer, dysknesias or stopping sinemet and taking an agonist, the majority said they would stay with sinemet since it was still more effective.
keep in mind it's not the l-dopa that directly causes the dyskinesias but the uneven supply to the brain inherent in pills. dyskinesias are significantly reduced using the intestinal l-dopa gel delivered by the duodopa pump. in fact, patients usually request more l-dopa when on the pump than on the pill.
since most of us will never get that pump nor want it, what good is knowing this? imho, it might indicate some docs need to do a better job managing sinemet and patients need to be as well informed as they can be about what "normal" outcomes are.