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The introduction of Sinemet nearly doubled the life expectancy after diagnosis and improved the quality of life of PWP. That's an unbeaten track record dating back to 1970. The claims of the agonists to be neuroprotective needs to be taken with a grain of salt. Remember Selegiline (Eldepryl) in the early 1990's. It was thought to be neuroprotective until it fizzled out, while the drug company which promoted it made millions. The recent evidence for neuroprotection for Requip and Mirapex is based on radioisotope uptake studies. The clinical part of those studies using the UPDRS DOES NOT support those claims. The longest of the two studies, the Mirapex (pramipexole) study was for 46 months - almost 4 years. At the end of those 4 years, the change in the total UPDRS score was 4.1 in the pramipexole group, and 4.0 in the levodopa group (the less the change, the less the deterioration, so if you even look at "trends" the levodopa group was better, if anything, after 46 months). These two figures were "not statistically significant." (That means that formally speaking, there is no difference.) The authors themselves were puzzled and tried to explain this problem. "Prior longitudinal studies there has been no clear correlation between the change in radioisotope uptake and the change in UPDRS score." "Several explanation for this poor correlation have been suggested. First, the UPDRS score is CONFOUNDED by the effects of anti-PD medications." <<<< BY THE WAY, this confounding should FAVOR pramipexole - so DESPITE this confounding stacking of the deck in favor of pramipexole, pramipexole was not superior to levodopa after four years with respect to the UPDRS scores. <<<< The authors further claim that "early in Parkinson's disease the tempral patterns for the rate of loss of the dopamine transporter and the change in the UPDRS score MAY NOT BE CONGRUENT. <<<<<<< So the drug company would have us throw away the UPDRS data and buy their drug, when the UPDRS scale has had wide acceptance and utilization for several years as the best available research scale for following the clinical course of the disease. <<<<<<< Be cautious. This bandwagon is not very solid. Jorge Romero MD ----- Original Message ----- From: "supermario" <[log in to unmask]> To: <[log in to unmask]> Sent: Saturday, June 15, 2002 6:59 PM Subject: Re: to Sinemet or not to Sinemet > Thanks God for Sinemet.. > > M > > > ----- Original Message ----- > From: "G. Hertz" <[log in to unmask]> > To: <[log in to unmask]> > Sent: Saturday, June 15, 2002 3:57 PM > Subject: to Sinemet or not to Sinemet > > > > Hi Don. To Sinemet or not to Sinemet... that seems to be the question in a > > lot of posts. When I was officially diagnosed over 9 years ago the first > > thing the neuro wanted to do was put me on sinemet or another med. I > > declined because I was breastfeeding my daughter at the time. [That neuro > > was not a good"fit" anyway] When I was ready to take meds 1 and a half > years > > later, I started with the dopamine agonists and after about a year or so > > started on sinemet. It was what I needed to do at the time to keep my > life > > on track. After about 5 years more I decided to go for a thalamic DBS for > my > > right side. Again, this brought me back on track for ADLs and work. I have > > spent most of my time on meds forgetting that I have Parkinson's. The > > reminder comes when meds wear off and I take another dose. I couldn't > > imagine *not* having been on sinemet. It has improved my quality of life > > tremendously. I, like you, would rather have my Sinemet now and live as > > full a life as possible. If it does mean I will reach end-stage PD sooner > > (I've never seen an estimate of time - what does holding off buy you -3 > > months? a year? 3 years?) then so be it. Is there any guarantee Sinemet > will > > bring you back to normal functioning if you hold off til you're *really* > > bad? Will you need higher doses because you have deteriorated for another > > year? I don't know. The progression of PD is so different in different > > people. > > > > What about the alternative "stuff" that has dopamine in it - does it count > > towards your "Sinemet debt"? > > > > I'm reminded of the often repeated story of people that save all their > money > > being workaholics so when they retire they can 1) take that trek through > > Europe that they've always dreamed of 2)buy a motor home and spend the > > next year visiting all their grandchildren 3) retire to Florida or 4) > > fill in the blank__________... only to find that one member of the couple > > becomes ill or dies without having the opportunity to do the things they > put > > off. > > > > A friend of mine who has a son with Down Syndrome coined the phrase > > "pre-disastered". Meaning the view that since he has Down Syndrome - > nothing > > else bad will happen to him. It's easy with Parkinson's to feel the same > > way. Somewhere in the back of your brain you think "I won't get cancer or > > heart disease or whatever - I have PD". > > > > My favorite bumper sticker says: Enjoy life. This is not a dress > rehearsal. > > > > Gail H. age 42 PD for 13 years ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn