My dear friends,

I cannot tell you, no, I can't begin to tell you, because I am not myself, how much grief I have gone through because of the phenomenon described here, yet I'm only one example. Tens of thousands of us have been through hell because of it, while the drug establishment pockets our money to develop drugs under their marketing departments.

If I'm not making any sense it's because I'm not making any sense.

Seeing a new neuro next week. Hope I can refrain from sounding like a complete paranoid.

Jaye

See, Jaye, this is what I mean. You are put in the position of thinking that you're being paranoid, and maybe even thinking is part of the cognitive effect of the disease. But in reality, you're kind of not, because the situation really is what you describe.

Peg, in terms of PWP on sinemet reporting the effects - well, I've been on Sinemet for at least 14 years now. Doesn't that count?

Also to clarify - well, I didn't start having dystonia until I was put on mirapex. Then it was really really bad trying to get off. But now that I'm off, it's generally a great deal more manageable. It was the transition period, the very long transition period....but dystonia while I was on mirapex was by far the worst.

I am 13 years into symptoms, 10 years post diagnosis, i am blissfully fluctuation and dyskinesia free, and still going strong working full time - this situation is made possible by Mirapex.

Boann - you are one of the lucky ones! The article includes evidence that not all people on agonists responded this way, but a significant number did. I am one who tanked on agonists; went off completely, but since have discovered that I need requip to soothe some symptoms that are otherwise intractable. So I am very careful with it.

I think that is what this study says - it confirms the misery some of us have experienced due to agonists, but doesn't promote their discontinuation - it just says be careful and pay attention to potentially dangerous side effects.

As we all know, PD is not a one size fits all disease - and neither are the drugs designed to control our symptoms.

What a shame that we can't have trust. I am not on any agonists now but suffered through enough days changing meds.

Unfortunately, all i see is a new name followed by research based in it. Is DAWS the PD version of neuroleptic malignant syndrome? That wouldn't be a bad thing; it's just that they make it sound brand new - "first time ever" and i'm having a hard time seeing anything new at all.

Like carey says, it's the what's next that might be the real message.

paula

more on compulsive behaviors
PARKINSON'S PATIENTS SHED LIGHT ON ROLE OF REWARD BIAS IN COMPULSIVE BEHAVIORS
http://michaeljfox.org/newsEvents_pa...cle.cfm?ID=594

Paula - I understand your reluctance to accept anything as new, especially when it confirms behavior we already recognize. The cool, and original, aspects of this research is that it was done by a doctor in clinical practice who noticed what was happening to her patients when an agonist was decreased or stopped - and then did something about it.

I wrote to Robin Elliott at PDF about it. He says that Dr. Nirenberg's research is genuinely original, and "I have talked to her at length about her work. It was she – alone – who saw these patterns of response to agonist withdrawal, in her own practice. She put two and two together, shared her tentative hypothesis with colleagues at a Cornell Grand Rounds last Fall (I was present), and then submitted her article to peer review. Now it has become a contribution to the science, and part of the lingua franca of discussions about agonists."

This is a doctor who was paying attention to her patients. Robin sent my email to her and she promptly replied, saying "One of the things that I discussed with Robin (while I was waiting for the paper to be published) was my frustration with the slow pace of the peer review process. But unfortunately, in academia, nothing is true until it is published in a peer reviewed journal. So although I presented the data at grand rounds and discussed it extensively with all of my patients who were taking (or contemplating taking) an agonist, it was not until now that the findings could be widely publicized. I am relieved that this time has finally arrived."

This project was retrospective - it used data already collected on patients. Seems to me we could benefit from more of this kind of research.

Carey,
Thanks for your posting your communications with PDF. It is nice to hear that there are caring docs out there! I havent read the paper so please excuse me for my questions, too impatient to get the paper and read it.....

Why did these patients go off agonists? did they exhibit compulsive behavior?
Is there any follow up on these studies as to why only certain patients have these problems?

Thanks
Girija

QUOTE=indigogo;610907]Paula - I understand your reluctance to accept anything as new, especially when it confirms behavior we already recognize. The cool, and original, aspects of this research is that it was done by a doctor in clinical practice who noticed what was happening to her patients when an agonist was decreased or stopped - and then did something about it.

I wrote to Robin Elliott at PDF about it. He says that Dr. Nirenberg's research is genuinely original, and "I have talked to her at length about her work. It was she – alone – who saw these patterns of response to agonist withdrawal, in her own practice. She put two and two together, shared her tentative hypothesis with colleagues at a Cornell Grand Rounds last Fall (I was present), and then submitted her article to peer review. Now it has become a contribution to the science, and part of the lingua franca of discussions about agonists."

This is a doctor who was paying attention to her patients. Robin sent my email to her and she promptly replied, saying "One of the things that I discussed with Robin (while I was waiting for the paper to be published) was my frustration with the slow pace of the peer review process. But unfortunately, in academia, nothing is true until it is published in a peer reviewed journal. So although I presented the data at grand rounds and discussed it extensively with all of my patients who were taking (or contemplating taking) an agonist, it was not until now that the findings could be widely publicized. I am relieved that this time has finally arrived."

This project was retrospective - it used data already collected on patients. Seems to me we could benefit from more of this kind of research.[/QUOTE]

Girija - from the press release:

In the current study, Dr. Nirenberg and first author Christina A. Rabinak, a third-year medical student at Weill Cornell Medical College, performed a retrospective analysis of a cohort of 93 people with Parkinson's disease, of whom 40 received DAs, and 26 tapered a DA for any of a variety of reasons -- most commonly because of ICDs. Among those who tapered a DA, five patients (19 percent) experienced DAWS. Two of the subjects with DAWS recovered fully, but three of the five were unable to successfully discontinue the drug because of severe withdrawal symptoms. These three study participants are currently living with their ICDs.

The NewYork-Presbyterian/Weill Cornell researchers made several observations about DAWS:

* DAWS only occurred in patients with ICDs, and not in those who tapered DAs for other reasons. However, only one-third of patients with ICDs experienced DAWS.
* Withdrawal symptoms were only alleviated by increasing the DA dosage. Other treatments, including high doses of L-DOPA, antidepressants, tranquilizers and psychotherapy, were ineffective.
* DAWS correlated with cumulative exposure to DAs, with the most severe symptoms occurring in patients with the greatest DA exposure.
* Subjects with DAWS had milder physical disability than those without.

Carey,

I completely agree with you that this has implications that we might not even foresee. It's important in many ways but mainly because it empowers us. We moan about how researchers and pharma don't listen to us, or that even our doctors don't listen- and we're right to do so. Honestly, no one is much listening to us because their world is not our world; everything is proscribed to happen in a certain way, it's a system that we're not really a part of other than as an end user or as a 'patient' in the most generic sense. This article tells us that our neuros can bridge the divide.

That's exactly what happened here. This is incredibly radical if you think of it. Most everything happens to trickle down from research into clinical practice, and it happens slow as molasses. Here we have something from the trenches, the nitty gritty of what is going on with us, the crappy quality of life some of us grasp onto, and it's passed onto the academics who basically should be scratching their collective noggins and wondering why they never knew any such phenomenon even existed. It can serve as a springboard for research in the neglected area of psychiatric aspects of PD, or even as a way to highlight how woefully inadequate our treatment options are- it's systemic, folks.

In the end, it's pretty exciting because it empowers us. Most research trickles down from the very abstract and after many years into clinical practice. Here we have what we experience everyday in the trenches, the crappy quality of life some of us cling to, this is what might inform the research; it works from the bottom up. More importantly it highlights how important dialogue is for our worlds. If we want to influence the research community, we need to encourage our neuros to be more like this exceptional doctor. She may not be folding proteins, but it is groundbreaking stuff nonetheless in the sense that it elevates the voice of the patient. I'm hoping at the very least, it'll encourage doctors to start cautioning patients beyond the usual ICD disclaimer and allow for some substantive discussions.

Does anyone know...were both Mirapex and Requip part of this study? Or better yet, has any research highlighted prevalence of ICD in both agonists? I only know from talking to PWP that many had ICD issues with Mirapex but were fine when they switched to Requip...

Laura

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.