There is much merit to this feeling worse when coming off. Most of the research I read says this is because sinemet therapy is nearing the end of its effective window of treatment, which is ONLY 3-5 years. So why are so many being put on it so soon? Why not save it until truly needed and all other remedies have been tried. There are DOZENS of meds that stop tremor and would allow things like benign tremulous parkinsonism (very slow developing) to be diagnosed and allow docs to see progression if there is any. Surely NOT a candidate for sinemet therapy as it would never be warranted or worth the risk.

We don't have to go off sinemet to get NMS or DAWS it can happen spontaneously and they don't really tell you that when it's prescribed. The doc that finally convinced me to take it as I struggled to maintain my career said what could be worse this stuff that you suffer or dyskinesia. Well in my case as in most the dyskinesia is far worse hence the numbers of people having DBS to help with it.

After all isn't this a disease with no definitive diagnosis except how we react to medication? If mine was ALL sinemet produced symptoms this raises more than a few questions. At 5 years I reached the end of sinemet's efficacy in treating me hence harder offs that I was told was progressing lead pipe dystonia. NOW TOTALLY GONE with tapering sinemet to 1/10th the dose I was on. Are docs too quick-and are we too quick to want to relieve what is excruciating suffering and slowness/frustration knowing a small pill is 15 minutes away from normalcy for most of us?

I think after 40 years that this drug is the mainstay for treatment says that the understanding is no further now with the drug than when it was introduced. Since it still costs me $171 without insurance when it should have long ago been generic/cheap and now there is a "shortage" seems to me like there is a population of must-haves that have nowhere else to turn and the drug companies know it.

It also speaks as to how little most doctors understand about the drug or PD. Most of the docs asked me why I wanted to stop if I didn't have PD. You're not serious are you??? Really???

Clearly most PD experts agree that hard OFF’S are a sign that sinemet is nearing the end of it’s efficacy in treatment for that patient. So what is easily diagnosed, as progression is also the end of effective treatment of sinemet. It seems to me we should be using this with the idea that 3-5 years and that’s what time we can expect it to work for us. That is NOT how it is being prescribed currently.

There is so much that otherwise treats PD including exercise and PT and other non sinemet drugs. It also makes me wonder how much PD dementia is due to the pharmacological pathology that multi-meds to treat side effects of other meds creates.

If dystonia and bradykinesia are symptoms of over 100 other diseases or disorders, and have so many behavioral or activity related things that change then makes me think there are hundreds of unexplored avenues we should be insisting on BEFORE sinemet.

The last person in my video who says that her symptoms were unbearable was experiencing dyskinesia (a side effect of sinemet). So if we avoid sinemet for as long as possible might we also avoid someone being permanently incapacitated, killed, or at the least undergoing unnecessary brain surgery? I think yes.

Go to www dot vimeo dot com/24665865 (I can’t post links yet-take out the spaces) I made this when I still thought I had PD. I don't think I got the credits on this version but will add them. Two sources clearly state the increasing bad OFF are a symptom of the diminishing efficacy of sinemet.

Password is oldpd