When visiting my doctor or reading books on PD by doctors they usually say take as much Sinemet you need and only cut back if you develop Dyskinesia.When I look thru the literature,I am amazed there are no studies testing the long rerm effects of Sinemet.There was one failed study done by Stanlry Fahn at Columbra that showed the more Sinemet you used the greaterv damage to the brain as showed on brain scans.He did not come to a conclusion as he said the group scanned was not large enough.but no followup trial was done.I have decided to take the least amoumt of Sinemet to keep me functional.I would to have your opinions. Stan

Hmmm, Stan,

It is probably very wise to take the
least amount of Sinemet that you
can get by with....
I don't know anything about the study.

Mary

Dyskinesias starting were a real concern to me before I started on Sinemet and so I held out.... in retrospect far too long before I started on it.
There was a lot of everday things I couldn't do but once I started on Sinemet my movement was much better.
In the early stages of P.D. Stan if you can go without I'd say do so however a little Sinemet to help you move won't hurt if you think you move better on it.
I'm a great believer in PWP being "captain of their own ship" so perhaps just experiment with a small amount and if it brings relief stick to it. If it doesn't relieve your parkinsons symptoms increase the dose.
Maybe buy a pill cutter and try 50mg at a time or even as little as 25mg if you haven't started on it?
It didn't take long for dyskinesias to start once I commenced on Sinemet but I've heard of others who don't have dyskinesias for a few years once starting it.
DBS a few years ago got rid of the dyskinesias, sinemet and offs so there is light at the end of the tunnel.
Cheers,
Lee

I've only been on Sinemet for a little over a year now and get slight dyskinesia once in awhile, but nothing to worry about. I've met a ton of people over the last year that are on Sinemet exclusively. Some get dyskinesia, and some don't. That's just part of the fun "gamble" that we all have to take when deciding what meds to use and how much. Sadly, it's the best option we have right now. You take the agonists and run the risk of sudden sleep attacks, edema, and possible life-altering OCD behaviors. What's a person with PD to do?

It has to be up to the patient. Before you start the Sinemet, why not try the Queen's jelly? I ordered some and am hoping to get it soon. I just tried Apple cider vineger to see if it would help my overacid stomach.

Asking when to start Sinemet can only be determined by you. You know what you want to continue to do and where to draw the line as to when you will be comfortable learning to live with PD. I stopped working one year after diagnosis and had a very difficult time with my self esteem. But I was able to somehow work through it and focused on getting the most up to date news I could on the internet to improve my life quality. It wasn't until my husband became sick of my selfish need to solve my illness and asked for a divorce, that I ran out of the house and admitted I was trying to control what I couldn't and damaging my marriage on top of it.

When I got home, anger had turned to offering my best friend his freedom, only to find it wasn't me he hated, but my obsessive nature in deal with the disease. After conseling, I can now say I am learning to live with the disease, and not have it as the foremost thing in my thoughts after living with it seventeen years. I have a couple genetic mutations and share the illness with an older sister.

My older sister always knew she would be a nurse. She got her degree, as I did, and began practising her profession. It was less than a year into her nursing practice, that she began showing parkinsonism symptoms. I would honestly say I saw her symptoms when she was still in high school because she had a most unusual stride. My sister chose to continue working and after 20 years of attempting to demy the severity of her symptoms, is no longer able to find a hospital to hire her. She chose to put her career first and deny herself the joy of children. I have three boys. She is going through a difficult time now, as most people do when they retire. But she knows she lived her life her way and ****** the disease. She will come to terms with the choices she made because she chose them. She will have no trouble looking back on her life.

There is no right way for everyone. You cannot ask society what to do with your life, you must get as much information about your situation and make an educated decision of what you are comfortable living with. Patients get mad but they rock on just like everyone else!!!

Vicky

I've been on sinemet almost since the day I was diagnosed. thats ten years now and I take 8-10 25/100 cr per day....little to no dyskinesia. I had to do some juggling to make it work but what I did was reduce my dose to a two hour schedule and I eat 20-30 minutes after I take my meds. I eat light, just a handful of almonds, or a slice of whole grain toast or whatever I want really, just eat small portions. (Oh ...I will become dyskinetic if I eat sugary foods. Sugar and low GI foods always mess up my medication. Once I get dykinetic I am pretty much stuck with it all day. It's tiring and grinds you down. I prefer to tolerate a bit of shaking as the alternative. I believe my diet is the ticket to being dysk free. cheers....jw

I just received an article from Dr. Fernandez (of the NPF and the University of Florida) on this very issue.

It's entitled "When Should Levodopa Therapy be Initiated in Patients with Parkinson's Disease?" by Irene A.C. Halkias, Ihtsham Haq, Zhigao Huang, and Hubert H. Fernandez. Drugs: Aging 2007 24(4), 261-273.

It's a new article, so I'm not sure if it's actually been published yet, or is coming soon. It is an interesting read.

Hope this helps...