My husband is delaying getting on Sinemet until his PD worsens to a point where he needs it to mantain a good quality of life. This is due to what we have heard about dyskinesia. We are both wondering something about this. I understand it causes dyskinesia, but when? At the first dose? After 6 months? 5 years? Nothing online really explains how this side effect mainifests and how bad it gets. Does it just keep getting worse until you cannot take Sinemet anymore?

What is your personal experience with SInemet and dyskinesia?

I have 10 years of meds in me and am just now beginning to think of dyskinesia. Others have reached this point in months.

Don't assume that sinemet is the danger. It looks like the agonists are the greater problem.

You might want to take advantage of being in the first stages to investigate ways that might slow the process. In particular, search the archives for mucuna pruriens and dextromethorphan. Good luck.

Interesting. This would explain why I cannot get definate information on this issue. Again, everybody is different....

I will research the drugs you mentioned, though my husband would need to get off his Azilect (MAOB inhibitor used to possibly slow progression as I'm sure you know) if he was going to take DXM. These drugs clash...

OK I just looked it up. My main question is this. It has been explained to me that once L-Dopa is started, you have an unknown period of time before the side effects such as dyskinesia begin. If my husband got on mucuna would it be as if he got on Sinemet (since mucuna is a natural form of levadopa and is recieved by the brain in the same way as the synthetic form) and would begin this aforementioned "unknown period of time"?

that a molecule of l-dopa is the same as any other molecule of l-dopa whether it was extracted from a plant or made in a flask. Often, natural extracts can contain impurites that may or may not give you undesired side effects. The chemically pure substance made via synthesis, is actually better because it's checked by the FDA for quality before it is allowed to be marketed, also the bean extract has no carbidopa in it so more of the l-dopa content is metabolized (decarboxylated) to dopamine (that doesn't cross the blood-brain barrier, so it is wasted) before it reaches the brain. When you have high blood levels of dopamine outside the brain, then the likelihood of side effects (on the heart mostly, but dopamine in the peripheral nervous system can be responsible for dyskinesias).
Like rev pointed out, we are ALL DIFFERENT in our ability to gain symptomatic relief from l-dopa. This is due to many factors, some of which are still unknown.

First of all, let me make it clear that I am talking about the ground bean powder, not any standardized tablet, capsule, etc. Any of the latter is just ldopa and, if that is the intent, then ol c/s is right - go with the "real" stuff.

However, mucuna is more than that. It contains dozens of compounds, some of them quite interesting. As ol c/s pointed out, it has no carbidopa and yet its ldopa makes its way in. It is interesting enough that about six years ago it was patented by a group of the top neurologists in the world including the most-published in the US.

For most of us it would be very difficult to separate mucuna data from all the other things. And BTW, the small amount of published research used doses as high as 30 grams - far too high. Five grams is much better.

I started getting dyskinesia in my 4th year of Sinemet..Actually, when my Sinemet CR stopped working, and I began taking Comtan and Sinenet seperately, that was when it started..Since I've changed over to Stalevo, it hasnt been as bad, and it was when I was taking the two drugs seperately

For me, I get dyskinetic when the Stalevo is wearing off, so I have found that taking my meds on time, is critical if want to avoid it, and I definately try my best to avoid it at all cost, cuz it drives me up a wall in a New York second..The other thing that happens, that has started happening to me recently, are off periods, which is why I have to be vigilant about the timing of my meds..I can go 4 hours on one dose of Stalevo 200 mg, but I will wear off before the next dose kicks in, so I overlap doses every 3 hours so that I lessen the chance of getting dyskinetic and wearing off inbetween doses..600 mgs gives me about 11-12 hours of on time

Everyone is different, so it is really hard to say, but it has been my experience that the further down the road Ive gotten away from my very first symptom about 8 years ago, the more critical the balancing act has become..I tried starting my meds 2 hours later this morning so I would crash 2 hours later tonight, and the result was I shuffled over to a chair this morning, and I froze up so solid that I couldnt take one more step to sit down..I had to ask my girlfriend to help me

The effect of this disease, is so different from patient to patient, that it can be very confusing..Research, educate, a good Dr., and trial and trial and error is about what it comes down to