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...

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

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.

check out amazon or ebay for pd books.
when it's time to take meds you'll know it. it might be years from now. why worry about dyskinesias, which may never occur, until then and hopefully you'll find a doctor who can guide you.
there are new drugs/treatments in the pipeline, i'd spend more time watching those. and i'm ready to go anywhere in the world if a promising clinical trial shows up. your husband is too young to risk a trial that may require surgery but you should stay current on treatments that might slow the progression.

remember, if there was an alternative medicine "magic bullet" out there it would be known by now. i've tried every supplement, chelation by tablet and IV, and even I.V. glutathione. maybe they delayed my progression and i'd be worse but the fact is, about 6 years after my diagnosis i started to get worse quicker and i started on meds. i wasted imho thousands of dollars with naturepaths who kept wanting to "keep trying".

my belief is that:
1. the blood brain barrier keeps most large molecules out of the brain which limits oral treatments.
2. anything that you could take orally that might repair brain cells is likely going to affect every nerve cell in your body which worries me so i assume any treatment that might reverse pd requires delivery to specific parts of the brain..
3. pd is caused by the loss of nerve cell function, either by damage or death. these cells lose function at a normal rate but we have enough that we die before pd symptoms appear. so those that manifest p.d. either were born without enough cells and/or suffered damage(s) from physical blows - football - or toxins - pesticides, manganese, etc.
so what we can do is hope treatments to slow the loss of the remaining neurons and/or rescue/replace the dead/damaged neurons are developed. there is no simple solution. no magic bullet. people with every conceivable lifestyle get p.d. no population has been found immune by their lifestyle/genetics. this implies there is no easy answer.

Can I just say how COOL it is to meet people such as you who stay so educated and informed on this kind of information. It is inspiring to know you are out there empowering and learning what you need to know for YOU. We hope to be the same way when the time calls.

In the meantime you are right, there is no need for us to worry about this stuff yet, but since my husbands diagnosis a few weeks ago I seem to need to learn all I can about the disease and treatments. I think it may be a coping mechanism. It's lessening as the days go by and I come into acceptance about this new reality. I imagine by the time we meet our Movement Disorder specialist in AUgust I'll have no questions LOL!

Reverett said: Don't assume that Sinemet is the danger. It looks like the agonists are the greater problem

I agree! I was dx in 1994 - dyskinesia began about 4 years ago. I had not increased anything - in fact, my L-dopa (Sinemet) had been decreased. But when I started on Comtan (or L-dopa mixed with Comtan called Stalevo), is when my dyskinesia got noticably greater. I have been on a low dose (8 mg)0 of Requip for years.

I have made my own hypothesis that dyskkinesia (sometimes called chorea) is a symptom of advancing disease - NOT a side effect of Sinemet. I also have observed that agonists - Requip, Mirapex, and COMT-related drugs (Comtan and Stalevo) are more the culprits in most cases. One reason I can boldly say that is because I personally know a number of PD friends who NEVER took L-dopa (either they did by choice and used supplements, or they took agonists only), and still developed dyskinesia.

To sum it up, it might be the case sometimes, but I believe dyskiinesia is a symptom of advancing of Parkinson's.

Peggy