As for Mirapex, I never went gambling or attacked the cute bag boy at the grocery - but I bought 2 houses in two years and ran up a LOT of credit card debt (still looking at $30,000) - when I was in this study and things clicked for me and my doctor. As my dad had been a big time compulsive gambler, I knew I didn't want to go there. Cutting my Mirapex in half seems to have brought things back in line.

No, I don't think 20% of us are doing outrageous things, but then, it would only be 20% of those on Mirapex or Requip (I guess, Requip?) - and I suspect that far more of us have been at the "impulsive" stage overspending or overeating, etc. than "compulsively" self-destructive. I think it is something to be aware of, to be sure, but isn't the danger Mayo's is painting it. (Guess they weren't funded by the Mirapex pharma, huh?)

not Parkinson's:

http://casinowatch.org/suicides/suicides.html

And billions of dollars of lawsuits against makers of mirapex and similar drugs must prove in court that the results are more destructive than what casino watch.org is claiming for the general population.
The percentage of parkies who engage in this type of destructive behavior has gone from a handful, to 3 percent, to 8 percent to 10 percent; a few months ago the Mayo was at 13 percent; now it's 20 percent; and they say that is an understatement.
Your Honor, I rest my case.
Cure for Parkinson's? Well there are all these other things that come 1st.

from:

2009 Movement Disorder Society

Ninewells Hospital and Medical School
Letter to the Editor

"In some instances Parkinson's disease (PD) patients become addicted to their own medication, or develop behavioural addictions such as pathological gambling, compulsive shopping or hypersexuality," says Dr. Alain Dagher, neurologist at the MNI and co-author of the review. "This is surprising because PD patients typically have a very low incidence of drug abuse and display a personality type that is the opposite of the typical addictive personality. These rare, addictive syndromes, which appear to result from excessive dopaminergic treatment, illustrate the link between dopamine, personality and addiction."
PD patients treated with dopamine agonists had an incidence of pathological gambling as high as 8% compared to less than 1% in the general population. In PD patients who develop addictive disorders, the problems started soon after starting dopaminergic therapy and stopped after treatment was discontinued. It was found that adjusting the dosage and combination of medication resolved the addictive ...

dystonia feels like drug withdrawal. i've never had a drug addiction [except smoking], but i go thru dystonia when i get too off...it's always felt like a drug addiction. We don't know [and the doctors sure don't either] what is the illness and what is side effects of meds and they need to add what is drug withdrawal.

the poiint is [forgot to say it ha] that we shouldn't have to be on 'sides' with this issue, and wouldn't be if the science could be trusted.

how many people were in Stacy's study? i have met him personally re gdnf and willl say right up front he isn't my favorite.

paula

"This is surprising because PD patients typically have a very low incidence of drug abuse and display a personality type that is the opposite of the typical addictive personality. These rare, addictive syndromes, which appear to result from excessive dopaminergic treatment, illustrate the link between dopamine, personality and addiction."


dystonia feels like drug withdrawal. i've never had a drug addiction [except smoking], but i go thru dystonia when i get too off...it's always felt like a drug addiction. We don't know [and the doctors sure don't either] what is the illness and what is side effects of meds and they need to add what is drug withdrawal.

I have neither been on Mirapex or Requip, and have watched this discussion mainly because a close friend (and family) were affected by the gambling issue very badly.

From personal experience of levodopa therapy it seems there are aspects of treatment that neither seem to be adequately recorded, or passed on by m.d.'s and neuro's as possible side effects on commencement of therapy.

Gambling, sexual compulsions, and extreme spending are the very visible end of compulsive behaviour, the ones that gain media attention, and are the least socially acceptable.

I believe that there are other levels of compulsive behaviour that are linked to the apathy and abulia caused by medication that can also be destructive in terms of an individuals control over the way they manage their time, their days, and many aspects of their lives. If one is spending addictive levels of time on the internet, or displaying checking behaviours more often associated with OCD, or start to spend unusual amounts of time doing repetitive tasks, rather than progressive or creative tasks, this surely also must be regarded as medication related, especially if it resolves with a changes of meds.

This happened to me, over several years, and while in the middle of it I was convinced that this was a progression of PD. Mentioning it to medical professionals didn't help. My eventual (having discovered almost by accident that this was not a PD symptom) choice was to limit the cocktail of medication that I take, to even the dose throughout the day, and to eliminate drugs that take me further down that road. I lost many months to finding out how.......

As levodopa replacement therapies seems to stimulate reward circuits it makes total sense to me that these things occur, and that depressive states that include repetitive compulsive behaviour not consistent with the normal personality of the individual should be discussed openly within the community, and that includes the people who design and deliver our treatments. I am deliberately avoiding the use of the word obsessive, as it is my belief that the individual is suffering from compulsion caused by medication and is not obsessive in the usual sense of the word. That the individual might be wholly or partially unaware of, or unable to control their own behaviour is not surprising at all. The drugs we take are powerful and mind altering.

As Paula says, the start/end of dose dystonias feel like addiction, as do some of these mental effects, and no-one seems to be looking at the longterm effect on the patient. As I get further into my relationship with PD I wonder about how this plays out in later stages, and whether some of the severe erratic behaviours that are often reported in later stage PD , especially in those in care facilities taking multiple medications, are actually the long term effects of medication itself, and just as much in need of being studied and identified as the highly visible and media exploitable ones that triggered this thread.

It seems unlikely that the high level of extreme behaviours the disputed study reports are actually present, but don't doubt that there are more subtle levels of suffering that are associated with medication - across the range of treatment. These should get attention - and a reasonable level of compassion....... In fact what I'd really like is a much more complete understanding of PD - perhaps it will come when the patient voice actually becomes part of the knowledge base instead of an irritation that the professional world only just about endures.

Apologies for this 'rant of the day' detour into the slightly off-topic........

Lindy

That was very well said and exactly true. Time is not being spent to relieve anything soon, to view an acceptable or representative sample of our vast populations in the US alone let alone globally. Go for the status. then perhaps you get offered consultant fees from industry?

It's corrupt and unfair to patients. The idea is to cure patients - remember? If not, which is far more likely, then just say so.

paula

It was not my intention to offend people by supporting my belief that people must decide at some point people must take responsibility for their actions and stop being victims.

This was not the correct venue for my belief system. It only upsets many and the focus is no longer on Bob's topic of the Mayo Clinic deleting remarks which which patients disagreed with their research findings. Bob and Paula only were thanking me for disagreement with the Minnesota Public Radio interview which gave incomplete information about genetics and I posted a correction with information for finding the information the doctors said did not exist. In no way did they support my second paragraph.

Vicky

Oh, Vicky, this IS the correct venue, you are not at all off topic and there is no reason to apologize for your truth. And I agree totally that patients must take control of their situation - that is one of the huge lessons to be learned from the PWP who were damaged by the drugs - extremely out of control behaviour, gambling, etc. - the pills were handed out like candies and nobody warned the patients that they might be frying their brains. They were victims of bad information and good salesmanship. NOW, because of that disaster, we finally realized that we must protect ourselves and each other, and every PWP should realize that ANY drug that alters your brain can have unheard of consequences - so if you see yourself or your loved ones and caretakers see you going off the deep end, unusual behavior, then cut the dosage, change the drug, take charge of what you are doing to your brain. The people who did get wounded by Mirapex and other drugs fell in the line of duty, struck down by an enemy they did not expect; their sacrifice taught us all a lesson, as did the victims of the Amgen fraud. We really have to watch out.
And, hey, if some PWP can win in court and extract a few billion from the perps, I'm happy for them. It should not happen that way, but we did not start the fight.

The issue of free will is a hot potato. When I first heard about people embezzling money, selling the house, going to the airport, flying to Vegas, blowing it all, I could not imagine how they can claim they had no idea how to stop themselves from doing it.
It is also very dangerous to win the argument in court, to the effect that Parkies cannot control themselves... because of the drugs.... but the "general population" only remember the first part - that Parkies are untrustworthy and dangerous and out of control.
If a man abuses a little girl for years, the excuse that he was under the influence of whatever is very, very hard to take. Primitive tribes had a more direct answer - they would simply kill him.

There are people who had very innocently taken Mirapex and then did not understand why they had flipped out. It's a habit most of society had - take these pills, they will cure your ills. We had to learn the hard way that the pills may cause almost anything; and furthermore, fighting PD is a big job - Alex Kerten in Israel says four hours a day, minimum, dancing or exercise and / or meditation, all sorts of things... he calls it very hard work.. We were brought up in a society that, with the help of pharma advertising budgets, believed in magic pills.
Altogether it is an unholy mess, but Parkies need not have hard feelings towards each other's experience, what we go through.
The perplexing thing is the time and energy and money - and these minutes you are taking to read this, and the lawsuits and the bizarre science studies ... all should be aimed intensely at curing the disease. Instead there are all these distractions going on. What percentage of Parkies become destructive? I don't know, but if we cured the disease, it would be zero.
Now I am the one distracting everyone with rants and raves. I have to shut up a bit. The readers of my never-ending website letter are complaining that I am always here and never there, so I have started Chapter 23 to update them, but as of now I have not yet even reached the part about the Mayo Clinic and Anuket, which we went through on this site some days ago. Some complain that I have cut them out of the discussion. They forget that here, I can have discussion. On my own site, I am dictator. I learn more here.
Chapter 23 is only partly available. It is called "When Parkies Go Wild", which I thought was sufficiently insulting to maintain my street cred.

(this is waaaay too long - sorry!)

anuket *has* been there, done that:

http://anukets-crusade.blogspot.com/2007/02/gambling-parkinsons-meds-just-read.html
scroll down to:
COMPULSIVE BEHAVIOR CAN OCCUR WHILE ON A DA BUT BE UNRELATED

“For part of the six years I have been taking a DA, I got a little too much pleasure out of shopping – but it could not have been classified as a side effect of the drug by any of the standards of measure used by any of the studies I plan to dissect. I was depressed (due to circumstances in my life for the most part unrelated to Parkinson’s) plain and simple, and that is what the onset and resolution of the behavior corresponded with, temporally speaking – it did not correspond with initiation of the drug or any dosage change (there has been no dosage change in almost six years.)”

so, you see, it is entirely possible for compulsive behavior to develop while one is taking a drug and not be related to that drug. It is particularly interesting that pathological gambling is highly associated with depression, which, as we all know, is rampant and Parkinson's.

moreover, the onset of the behavior in question is always said to occur in conjunction with either the initiation of therapy or an increase in dosage. What causes the need for initiation of therapy on increasing dosage? The worsening of symptoms creates the need for initiation or an increase in dosage -- I don't know about anyone else but I find that moment quite depressing!

This all goes to your point Lindy, as do inevitable omissions like the fact that 90% ( that is an educated guess) of the people who gambled on a dopamine agonist were also taking levodopa.

I wish that, just once, someone who believes this drug is responsible for this behavior would address even one of the points that anuket makes, or one of her criticisms of one of the studies – because that is what she is taking issue with – the validity of the studies – not with anyone’s personal experience.

but no one ever has, I don't think, at least I have never witnessed it.

these studies are not rocket science - there are no unfamiliar terms like mglur4 or sonic hedgehog or autophagy - the language and the concepts are understandable to the lay person.

and the caliber of flaw is on the level of claiming to have found a causal association based on having found 11 people who experienced this phenomenon while taking an agonist - that is it, just 11 - no mention of 11 out of *how many.* was it 11 out of 11? or was it 11 out of 1,000,000? no special training needed to see that without that piece if information, the claim of a causal association is completely unsupported, not to mention irresponsible and unethical.

and that study was published in a peer-reviewed journal, so, so much for peer review.

in the studies that do put forward a prevalence, that number has been climbing steadily since the first study in 2003, which claimed to find a then-alarming prevalence of 1.5%. Six years later, they are claiming a whopping 20% prevalence and calling it an underestimate. where will it stop? how high will that number go? If goes up to 25%, will it be questioned? What about 35%? 50%?

This is not without cost to pwp in general.

at an alleged 20% prevalence, and with the relentless publicity this has gotten since 2003, it is reaching the point at which the general public is aware of, and believes, it. i, personally, have already had comments suggesting i might be engaging in or vulnerable to of compulsive behavior directed at me. Of course, *we* know that the 20% applies only to those taking agonists, but i guarantee you that that distinction is lost on the general public, so welcome to the world of being viewed as a hypersexual pathological gambler waiting to happen, everyone.

All of which would be unfortunate but unavoidable if 20% (or more) of pwp taking agonist were experiencing such a phenomenon.

I don’t think they are. And I don’t think the prevalence estimate will stop its upward climb at 20%. Why? between 1966 and 2002 about 2.4 studies per year containing the words compulsive and Parkinson’s were published. between 2003 and 2009, 28 studies per year containing the words compulsive and Parkinson’s were published. Call me cynical, but this is not without benefit to the people doing these studies.

I have read the studies anuket questions in her blog, and I have found her facts to be accurate. I think an estimate of 20% prevalence should make everyone question – that is HUGE.

I know that at least five of these gambling studies do not support their conclusions. I think this is getting to the point at which it is damaging to pwp in general. And I implore anyone and everyone with an interest and the time NOT to just believe (or not) me or anuket but to read at least one of those five – two of them are available for free at:

http://www.ncbi.nlm.nih.gov/pmc/issues/177782/
and
http://archneur.ama-assn.org/cgi/reprint/62/9/1377?maxtoshow=&HITS=10&hits=10&RESULTFORMAT=&full text=dodd&searchid=1&FIRSTINDEX=0&resourcetype=HWC IT

Or, if you have read a study that you think that supported its conclusions, I would love to read it.

Paula, in answer to your question about Dr. Stacy study, here are some numbers.

Total study population: 1884 patients who were seen in a 12 month period at a particular institution

Portion of the population taking a dopamine agonist: 1281
Portion of the population taking Mirapex: 529
Portion of the population taking Requip: 421
Portion of the population taking pergolide: 331

The number of people who gambled while taking a doping agonist: 9

Of those nine, eight were taking Mirapex, one was taking pergolide, and none were taking Requip.

Stacy puts forward a prevalence (Or incidence, it is not clear – the difference is not insignificant, but gets too complicated if you try and take into account) in the general population ranging from .3% to 1.3%. He provides no source for this range.

If you look at the total number of people taking dopamine agonists, and the number of people who gambled while taking dopamine agonists, you’ll see that .7% gambled while taking dopamine agonists. This is well within the range of the general population provided by Dr. Stacy.

However, just looking at the Mirapex people 8/529 yields an incidence of 1.5%.

So, the actual difference between the rate found among those taking Mirapex and that of the general population is .2%. This is a study that started this whole thing.

In terms of statistical significance, the difference between .3% and 1.5% is statistically significant. The difference between .4%, all the way up to 1.3%, and 1.5% is not statistically significant.

Anuket sent her calculations to Dr. Stacy, after having them checked by a statistician, and asked Dr. Stacy if they looked right To him. He said he was not a statistician but that they looked right to him – and he would not comment further on them.

[edited to add to that the reason Anuket calculated the significance herself was because Dr. Stacy had not done it in the study. He provided all the numbers, and said that they supported the conclusion that there was an association but did not do the math in the study]

Ordinarily, when one fails to find a statistically significant differences, one has failed to find an association. In this case, however, the failure to find a statistically significant difference was turned on its head and put forward as supporting the claim that an association had been found.

The next study was published in 2005. It is at least equally flawed if not more so, as is the third study, published in 2006. These three studies form the foundation upon which this theory is built, and they fail to support their conclusions.