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Jorge, In your opinion, why don't we have an equal or better medication for Sinemet after all these years? Is it mainly a sleeping set of symptoms that didn't get enough publicity until recently? Is it pharmaceutical companies fearing too small a market? Is it scientists searching for a "lost cause" cause of the disease rather than medications that would improve quality of living? Over the years, a great deal of money has been allocated for research. I can't help but wonder what projects were granted and how many of these scientific endeavors resulted in utilitarian benefits for patients. One final question. Is Sinemet also a primary medication for other neurological diseases that carry a different set of symptoms? In thought and mind; in caring and friendship, E of the headdress ----- Original Message ----- From: "Jorge Romero MD" <[log in to unmask]> To: <[log in to unmask]> Sent: Saturday, June 15, 2002 8:47 PM Subject: Re: to Sinemet or not to Sinemet > 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 > ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn