Hi

I've been taking Requip for three years now. I'm 43, in good health except for a #$##% brain disease.

rigidity and tremor are becoming problematic. and of course the agonist has always caused fatigue.

So I'm addressing you "pros" out there, any regrets for taking sinemet too early, or regrets for not taking it soon enough. I'm seeing my neuro at Struthers Parkinson Center this Friday.

Warmly from Minnesota

Randy

I had 10 years of symptoms, 7 of them diagnosed, before starting sinemet. My neurologist was of the belief that one should wait as long as possible. I have to say I was pretty miserable when I finally went on it- dysfunctional off meds.[agonists, cogentin-which made me feel separated from the rest of the world].

It's gone exactly as commonly predicted for me. Sinemet gave me back my movement; side effects develop. My offs became worse including the development of dystonia, and my ons began to include dyskinesia. I am taking a hefty dose now, but it's the difference between life and lying there unable to do nothing. Amantadine is a life saver for minimizing dyskinesia.

good luck with your decision,
paula

I've had this "#$##% brain disease" for 10 years now. I was started on requip and then Mirapex. Both made me so sleepy that all I could do was sleep. I was then put on Sinemet. So except for the first 6 - 7 months, I've been on Sinemet from the start. Yes, the dosage has increased over the years. Yes, side effects develop, dystonia, and dyskinesia. So far this has been manageable. I'm still getting adequate relief from the Sinemet and look to several more years with good results.
It's totally up to you as to when you start taking Sinemet. By the way it sounds you have reached the point where the agonist is not working for you. I'd say it's time.

GregD

I bet you all get tired of hearing that, but it is true. The short answer is when your symptoms interfere with your life to an objectionable degree.

Having said that, you'd be surprised what you can put up with. I have a friend who is just starting sinemet after 10 years on an agonist mix. YOu need to realize you will have about 10 years of sinemet ecaffacy, then you will max out on sinemet and have dyskinesia. Then your options will be limited at this time, to a DBS. DBS is not garanteed relief, but it is close.

I figure that there willl be other treatments available when and if my DBS loses its effectiveness.

This is my plan. Yours may (Probably!) will differ.

All I can suggest to you is this is the "quality" time of your life. Use it wisely.


Charlie PD since 1990, DBS-STN in 2002 at UCLA

hello,
I am about your same age - just turned 45 and the last 15 yrs w/ theplague...

my first encounter with levodopa was horrid - it made it sick to my stomach,
I called the doctor who had given it too me right off the bat... in 1994
I told my kind neuro crying -if this is feeling better -
I'd rather shake! more than likely at the time they did not have carbidopa in it,so it would stay in the stomach too long - at that time they didn't have anything except donperidone which I had to get from Canada...
so I decided to take gaba and tyrosine, and B-vitamins, that waent on until
1998 - when my midwesternern doctor of neurology at the University of Kansas, told me bluntly, you can look and feel alot better -take the meds while you are still young
- look at you -you can't even sit still...
yessiree -that hurt me to the core - death by embarrassment...
but there will always be side effects - the doctors will be trhrowing pills at cha afterwards -if you have been given mirapex - the insane assylum drug -
you will more than likely have more side effcets and therefore they will try to give you more drugs to calm the effect of the previous drug?
and on they go~
do not do the long list - however the levodopa is the "biggee" "the gold standard" the best they have to give...
so chose wisely ...

so I took it again in 1998 - and shortly there after ate a hotdawg - not a good combination
*I vomited*
it's alwaysz something!

Hi Randy

I've taken sinemet for more thn 25 years and the best advise i can give you is to take the smallest dosage possible to keep you comfortable. My neuro has always allo wed me to take my meds as needed rather than on a schedule. For most of those 25 years I took the sinemet l/2 at a time only when I needed it. Some days 2 pills throughout the day was enough while other days I needed more.


Good luck to you -

dottie

Basically Randy..When you've reached the end of the road with Requip/Mirapex, and the pain begins to outweigh the pleasure, its time for Sinemet..Depending on what works for you, you have the option of supplimenting your Sinemet regimen with either Requip, or Mirapex to either compliment the Sinemet, or to use less Sinemet..Whatever works for you..It usually takes a while to get the "cocktail" right, so to speak

i haven't tried sinemet or any of the others, yet. i have doctor appionments coming up so i think i'm ready to try sinemet. i realy dont like the sound of the side effects associated with the agonists.
i am trying mucuna bean powder now and for the last four days. its loosened my stiffness alot.

randy, did you have side effects from the meds youve taken so far? oh, i see youve had fatigue.

including moi.

Started on requip with dx in 2000. Added in sinemet about 2002. Maxxed out on requip at 24 mg for the last couple of years. I hit 800 mg of sinemet about then too. Switched over to sinemet CR and got it down to 800 mg today (btw, 800 mg of CR is about 600 mg of the "hard stuff"). It is still working but there are times when things are dicey.

If I had it to do over I would try the most promising alternative stuff before I added sinemet. The less stuff for your liver and kidneys to deal with the better. I would try ginseng, CDP choline, and dextromethorphan, at least. Those might buy you a lot of time. (But if you try the dex cut back on the requp at the same time because they use the same route through the liver.) And at some point I would try mucuna before giving in.

Once I did start the sinemet, and maybe sooner, I would be certain to keep up the antioxidants, especially alpha lipoic acid - it gets past the BBB. Ldopa seems to do some serious damage of its own and the antioxidants may stop it.

But any way you look at it, you are probably stepping into an addictive drug habit. But eventually the choices get less and less.

we are also unique in our professional life, the decision will be influenced by the demands of your job as well as personal/domestic concerns.

I just knew when I needed L-dopa, and the dop ags weren't enough, I bet you will know it yourself when the time is right.

Neil.