View Single Post
Old 01-16-2010, 02:14 AM
boann boann is offline
Member
 
Join Date: Sep 2006
Posts: 165
15 yr Member
boann boann is offline
Member
 
Join Date: Sep 2006
Posts: 165
15 yr Member
Default Please help me understand

If one is diagnosed with Parkinson's at the average age of 60, it will be approximately 19 years until they reach the average life expectancy in the United States.

The useful life of levodopa is on average about five years with 80% of people experiencing on-off fluctuations and dyskinesia by the fifth year.

If they live to the average life expectancy in the United States, they will have to manage this disease for another 14 years before they die.

If you're like me, and you were diagnosed in your mid-30s, you can expect to have to manage this disease for a whopping 40+ years -- and if you're like me and diagnosed in your mid-30s and you are prescribed levodopa right off the bat you probably won't even make it five years before you are wildly dyskinetic and fluctuating out of control -- and you still have 40 years to go managing this disease.

None of the medications that are prescribed to ameliorate levodopa's side effects works.

The only thing that has been shown to tame this chaos is brain surgery -- DBS.

Why are people so upset about the idea that one might experience withdrawal if one goes off a dopamine agonist? There are plenty of drugs from which one would experience withdrawal when one ceases taking them.

If you have to go off the drug, you go through withdrawal, it may be terrible, but it ENDS.

When the side effects of levodopa start, that's it -- it is downhill from there with the side effects gradually gaining ground until eventually they are running neck and neck with symptoms in terms of creating disability. *because there is no alternative* to levodopa (aside from dopamine agonists) people remained trapped in a position in which they have to choose between experiencing a terrible symptoms of Parkinson's disease or the terrible side effects of levodopa.

Unless one has the courage, insurance coverage, and the eligibility for brain surgery, there is no relief from the hell of levodopa,

it does not end.

The problems that levodopa causes, while different in nature from the problems attributed to dopamine agonists, without question, in my opinion, at the very least rival those problems in their capacity to have a negative impact on one's life. And levodopa blows dopamine I agonists away in terms of inevitability of experiencing debilitating side effects.

And yet, there is barely a peep about levodopa.

If I were newly diagnosed and started looking around on the Internet for information about treatments for Parkinson's disease, I am not sure I would ever take a dopamine agonist -- there is so much bad press out there about them. I would never guess that the chances that it would work for me are much higher than the chances that it would cause any of the problems that have been getting so much attention for the last six years.

And I would NEVER guess what would be in store for me after a few years on levodopa. There is almost no bad press out there about levodopa.

I did some research, years ago, on the state of mirapex's market share, and the number 17% sticks with me. That is huge -- either boehringer ingelheim did a kick *** marketing job, or that drug works for a LOT of people. Judging from my own experience, as I said, it has saved me from what would have been living hell by this point had I started levodopa nine years ago instead of mirapex.

Why do people seem so much more upset by the problems caused by dopamine agonists than by the problems caused by levodopa?

I'm baffled by this.

I hope you'll forgive me if I've already asked this question -- I sometimes ask questions and then realize I had asked the same question years before.

Last edited by boann; 01-16-2010 at 02:22 AM. Reason: because 19-5=14, not 12
boann is offline   Reply With QuoteReply With Quote