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08-29-2015, 12:00 PM | #1 | ||
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I was diagnosed with Parkinson's 11 years ago at the age of 44. I am now 55. During those 11 years, I have been on the same, exact medicine ... as well as the same dosage (Mirapex 1.5 mg. three times a day and Trihexyphenadryl (or Artane) 1 mg. two times a day.
I was told, somewhere along the line, that once you start taking Sinemet (or Levadopa), you have between 5 and 10 years before the side effects of the medicine are almost worse than the disease itself. Does anyone know if this is true? The reason I ask is because I am on the bubble of having to start Sinemet and I just got back from a seminar on Medical Cannabis that sounded promising. Under a separate category, I'll ask those who are currently taking legal Cannabis if they'd share their experiences with the drug. Any insight into Cannabis is appreciated. Thanks!
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Terri People will forget what you said, people will forget what you did, but people will never forget how you made them feel. Quoted by: Maya Angelou (Reader's Digest Oct. 2006) |
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08-30-2015, 10:36 AM | #2 | ||
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Magnate
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http://www.cno.parkinson.ca/site/c.j...sons_Video.htm parkinson's society central and northern arizpna Dr. Eric Ahlskog Peterborough Conference, October 2012 old timer, written at least 2 books on pd, initially talks about pd in general and history of L-DOPA, gets to the meat and potatoes around 17minutes into video. also discusses agonists and azilect. |
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08-31-2015, 04:01 AM | #3 | ||
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Junior Member
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6 months ago , i had the opportunity to assist to a conference from Erwan Bezard , one of the most respected researcher for PD in Europe . His conference was about PD meds and Side effects (dyskinesias and so on ) there i learnt that after 5 years of Sinemet (or modopar par or stalevo ) , 100% of the YOUNGER PD patients taking those meds will get the horrible side effects , FOR THE OLDER PD sufferers , the side effects will affect 100% of them after 7 to 10 years of intake , so yes , Levadopa meds means side effects FOR SURE i don't want to frighten you , but be warned if you have the ability to wait a few months before starting levadopa meds , i would suggest you to do a lot of juicing , try nicotine patch therapy and sports .... there are a few groups on Facebook where you can find pd'ers using those methods kind regards |
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08-31-2015, 08:16 AM | #4 | ||
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Magnate
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here's an article discussing l-dopa phobia by dr. okun. http://parkinsonsecrets.com/blog/201...evodopa-phobia |
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"Thanks for this!" says: | Arsene (02-17-2016) |
08-31-2015, 10:15 AM | #5 | ||
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be a brilliant mind. We should all try and keep open minds. |
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08-31-2015, 08:35 PM | #6 | ||
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Junior Member
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The vast majority of PD research on CL medication has been done on older research subjects 65+ years old diagnosed and older. Since that age range is the most prevalent diagnosed by far. This has scued the results of long term use of this medication IMO.
I would like to see a study with subjects under 50 diagnosed on CL for 10 years+. |
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09-01-2015, 01:07 AM | #7 | ||
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villiers writes "after 5 years of Sinemet (or modopar par or stalevo ) , 100% of the YOUNGER PD patients taking those meds will get the horrible side effects". I agree with soccertese that this is incorrect. I was diagnosed at 49 and have been on Stalevo for over 5 years and haven't developed any horrible side effects. Stalevo doesn't do a perfect job, so I still have problems. These problems are slowly getting worse. But they were present before I started on levodopa.
John
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Born 1955. Diagnosed PD 2005. Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg |
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"Thanks for this!" says: | eds195 (09-01-2015) |
09-01-2015, 03:21 AM | #8 | ||
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From the experience of John and Soccertese the statistics by Monsieur Bezard are clearly incorrect yet many people do have levodopa 'related' problems. To further muddy the water it is often the agonist in combination with L.dopa that causes the dyskinesia in early onset.
We all tend to interpret these matters to suit our views. I do think we need to take L.dopa off it's pedestal and stop calling it the gold standard for as good as it is I rather fancy something a bit better . I feel we are giving the world and the powers that be the impression that PWP's are pretty well catered for and so leave things as they are. I'm pretty certain 100% of PWP's are not 100% happy with their meds. Perhaps the differing points of view are another indication that there are simply many PD subtypes and until we know what they are, when making treatment choices such as starting L.dopa it will always be a case of "ya pay ya money and take ya chances" Again, as ever, nowt is black and white in the land of Parkinsonia Nigel |
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09-01-2015, 06:52 AM | #9 | ||
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Magnate
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kind of rambling here but very difficult to fix many parts of the brain simultaneously, how do you get different drugs to different parts of the brain thru a semipermiable bbb? so researchers of course develop drugs that will help the most people. as far as advanced pd'ers not satisfied with current meds, i agree. i think part of that is an unmet need and another part is neuros/mds's don't have the time and maybe the expertise to tweak drug regimes to get the best symptom relief, maybe it's because were're all different, maybe because there aren't enough of those professionals, maybe because many of us can't afford the new drugs. finally, a lot of money is going towards biomarkers, early detection, basic research since theoretically society benefits more from stopping pd from progressing in young people rather than trying to cure it in advanced pd'ers? dunno. if you're pretty sure there's going to be a "cure" in the next 5 years, take the drugs which are best for you, which is often l-dopa. that was my thinking when first diagnosed, plus couldn't tolerate agonists. |
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09-01-2015, 10:41 AM | #10 | ||
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