[proudest_mama]

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!

[soccertese]

Originally Posted by proudest_mama

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!

are you thinking that the sinemet somehow makes permanent, damages to the brain and it brings on the side affects? there is lots of research disproving that belief. so if your're afraid to even try sinemet because you think it will cause irreversible damage/side affects you are wrong imho. but do what you want. don't you know anyone doing fine after 10years on sinemet? .i suggest you view this video.

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.

[villiers]

Originally Posted by soccertese

are you thinking that the sinemet somehow makes permanent, damages to the brain and it brings on the side affects? there is lots of research disproving that belief. so if your're afraid to even try sinemet because you think it will cause irreversible damage/side affects you are wrong imho. but do what you want. don't you know anyone doing fine after 10years on sinemet? .i suggest you view this video.

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.

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

[soccertese]

Originally Posted by villiers

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

imho that's absolutely false and misleading information. personally, i've been taking l-dopa since 2005, i have taken for short times other pd meds such as selegiline and azilect but currently only on l-dopa amd have no side major affects. i know people on a combo of requip, amantadine and stelevo(contains l-dopa) that have had pd for over 10 years and you wouldn't know they had pd. you seem to be only seeking out information from those that agree with you. i have no opinion on nicotine but that comes with it's own dangerous side affects.


here's an article discussing l-dopa phobia by dr. okun.
http://parkinsonsecrets.com/blog/201...evodopa-phobia

[badboy99]

Originally Posted by villiers

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

Thank you Villiers for sharing what you learned with us. Mr. Bezard seems to

be a brilliant mind. We should all try and keep open minds.

[cbrf1wr]

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+.

[johnt]

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

[Niggs]

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

[soccertese]

Originally Posted by cbrf1wr

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+.

that's me, diagnosed at 48, now 61. bottom line, pd sucks, is difficult and expensive to treat as we get older, the fact that with the advent of l-dopa we no longer die from pd much sooner - we do suffer though - and of course l-dopa, agonists and dbs put a damper for awhile on developing new drugs since the drugs/treatments have to be better than the current treatments or fill a needed niche and those are high barriers. as an aside, the need for continuous delivery l-dopa was recognized in the 80's which is why CR was developed but seems a daunting task to develop a really good CR!! and that pd is perceived to be the most easily curable of the most common CNS diseases likely put a damper on drug research. so we have neupro patch, extended release oral agonists, rytary, a new and maybe not a whole lot better IR/CR C/L combo, we may have inhaled rescue L-DOPA, we may have a sublingual rescue apomorphine, both of which i could benefit from by not having to take too much C/L to make sure i don't go OFF when out and about and a quick rescue if i do, there is continuous delivery DUOPA, a continuous delivery pump in phase 3 testing from nuoderm and some other drugs in development plus more intelligent DBS which can change it's setting on the fly plus all the disease modifying gene therapy, stem cell, transplant research. suffice it to say that side affects from l-dopa go way down with continuous delivery, implying that it's the pd progression that elicits the l-dopa side affects, not the l-dopa. in fact, when DUOPA is discontinued, the benefit of the reduced side affects continues for awhile.

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.

[badboy99]

Originally Posted by proudest_mama

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!

Hi Terri give liquid form CBD a try or even CBD from flowers if you prefer to smoke it. Definitely worth a try. Here is a great source: http://popnaturals.com