Mirapex Victim Awarded $8.2 Million in First Gambling Addiction Lawsuit

[Fiona]

From:
http://www.newsinferno.com/archives/3562

"The first Mirapex lawsuit to go to trail has resulted in an $8.2 million award to the plaintiff, Mealey’s Emerging Drugs & Devices is reporting. The lawsuit was the first of more than 300 to go to trail in the Mirapex multidistrict litigation in the US District Court in Minneapolis that blame the Parkinson’s Disease drug for causing compulsive gambling. It was considered a bellweather case, and was being watched by many to gauge the strengths and weaknesses of the other Mirapex lawsuits.

Gary Charbonneau, who began taking Mirapex in December 1997, said he suffered from a gambling addiction from March 2002 to February 2006. In that period of time, he gambled away $260,000. Charbonneau’s lawsuit not only claimed that Mirapex caused his gambling problem, but that the drug’s makers, Pfizer and Boehringer Ingelheim, knew about its potential to cause compulsive behavior, but did not issue any warnings, or take steps to investigate the true scope of the problem.

Other Mirapex lawsuits claim that Boehringer Ingelheim received reports linking the drug to compulsive behavior during clinical trials conducted in the 1990s, and received additional reports of patients developing gambling addictions after it came on the market. It wasn’t until 2005 - eight years after its introduction - that information about compulsive behavior was finally added to the Mirapex label.

The defendants argued that they were not liable for Charbonneau’s addiction because the Food & Drug Administration (FDA) had not asked for any label changes, despite reports that Mirapex was causing compulsive behavior. They also argued that Charbonneau’s gambling problem started years after he began treatment with Mirapex, and continued long after he stopped taking the drug.

The federal jury, however, agreed with Charbonneau and awarded him all of his gambling losses, along with $7.8 million in punitive damages. Neither Pfizer nor Boehringer Ingelheim have commented on Thursday’s verdict, but an appeal is likely.

Mirapex, one of a class of drugs known as dopamine agonists, has long been suspected of causing compulsive behavior. The suspicion was bolstered in June, when researchers investigating the link between dopamine agonists and compulsive behavior presented their findings at International Congress of Parkinson’s Disease and Movement Disorders conference in Chicago. The study, which looked at more than 3,000 patients from 46 medical centers in the United States and Canada, found that Parkinson’s patients on dopamine agonists are nearly three times more likely to have at least one impulse-control disorder - including gambling addiction - compared with patients receiving other treatments. "



THIS is just about the only kind of working within the system I can contemplate right now. The truth needs to be told, and all its implications made crystal clear before any healing can happen.

I loved hearing about the East African shaman who said that among his people, when someone is sick, the whole tribe works on it every day until he or she gets better.

[bluedahlia]

GOOD!!!!!!

Ok, a few more. Been suffering for 7 years because of this devil drug that took over my mind, on top of Mr. Parkinson taking over my body.

[paula_w]

Here are some of the disclosures that were printed [required] at the Amer. Academy of Neurology this year. They are labeled by name.


C. Olanow
http://www.aan.com/annualmeeting/search/index.cfm?fuseaction=disclosures.home&letter=O&lastname=&start=93&p=61

Anthony Lang -lead investigator for GDNF failed phase 2 trial
http://www.aan.com/annualmeeting/search/index.cfm?fuseaction=disclosures.home&letter=L&lastname=&start=94&p=61

Mark Stacy, researcher heavily involved in proving mirapex was causing these problems. Note Boeh/Ingleheim not on his list.
http://www.aan.com/annualmeeting/search/index.cfm?fuseaction=disclosures.home&lastname=Stacy&search=Search

Here's a pic of more with their disclosures.
http://theparkinsonsgroup.com/faculty.asp

Most, if not all, list Boehringer Ingelheim, distributors of Mirapex.

paula

[ol'cs]

sooner or later the insurance companies won't go near anyone who has PD. These are the kind of blunders that plunders those "rich drug companies" to the point where they won't produce substances here on American soil. It has unseen undercurrents and has potential repercussions that are against us. WE must remain the storehouse of the world's chemical and drug industry. Sure you expect a financial closure in the cases of obvious death and dismemberment (including those for the mind), but don't kill the goose that lays the golden eggs.

[Fiona]

sooner or later the insurance companies won't go near anyone who has PD. These are the kind of blunders that plunders those "rich drug companies" to the point where they won't produce substances here on American soil. It has unseen undercurrents and has potential repercussions that are against us. WE must remain the storehouse of the world's chemical and drug industry. Sure you expect a financial closure in the cases of obvious death and dismemberment (including those for the mind), but don't kill the goose that lays the golden eggs.

ol' cs, thanks for your thoughts. I wonder what other neurotalk members and readers who live in various parts of the globe think about the necessity of your idea of the USA controlling the world's chemical and drug industry. When I'm talking about the implications of the truth being made clear, I realize that challenging the big drug companies could and likely will threaten our economy, since they make higher profits (which continually escalate) that are larger than all the other Fortune 500 industries combined (oops, guess they are rich). But things need to change. Our economy at one point was based on slavery, and that needed to change.

Besides the fact that most of our drugs are manufactured in China anyway (where our notions of quality control don't really apply), why should we remain the storehouse of the world's chemical and drug industry? We spend more on health care - two and a half times per person as any other industrialized nation -and we rank 37th in terms of overall quality of healthcare amongst all the world's nations? Lowest on the list of preventable deaths than any other industrialized nation? We're not doing a good enough job at all, and it seems like there's a lot we could learn from how other countries do things apparently. And the insurance companies already won't touch you if you have PD - and that just ain't good enough either.

And I, for one, have had it with this tiptoeing around the robber barons that uphold our economy. Our way of doing things, medical system, and our very act of consumption has become based significantly on untruths, on fear, on deception.

Yeah, it would shake things up to start holding those holding those golden eggs to start being accountable. That will be difficult for all of us.... But this is only the beginning, and things will get far worse - and soon - unless we develop the moxie to look at how things really are, and demand accountability and justice.

[lindylanka]

Hi Fiona, CS, Paula and all,
I am glad that this case HAS this result, I have been watching the Mirapex story closely for a while, as I know someone over here in the UK whose life was very adversely affected by this drug, and whose family also suffered too. As someone 'looking in' it seems obvious that no matter where in the world you are the stranglehold of the pharma companies is great for shareholders, but not for those people on the ground with real diseases and conditions, and that includes people in the US, so when these kinds of discussions have come up I have sat on my hands and mostly watched them happen, because nothing that people in my part of the world say can affect anything in the slightest.

I have strong feelings about this having worked for a WHO gynae doctor trialling contraceptive implants in the third world. The way things operated there was nothing short of shameful, the women were very uneducated, often with very poor health, and were neither offered nor would have been able to comprehend precautionary documentation, and I completely balked when I was expected to type up reports that filled in information for the pharma co, that were blatant falsity with the knowledge of the company local reps. I quit the job in disgust, but would have been fired otherwise for refusing to do what was asked......... it was not that the drugs were bad, that was not my judgement call, it was the way that it was all administered, the half-soaked and negligent snake-oil way things were done.

It seems to me that Mirapex is just another such drug, among the many, which are thrown at the patient as being useful, and once prescribed is wholly inadequately followed up, mainly because of medical and patient ignorance, brought about by misinformation that is controlled by the pharmas. Where is screening for suitability, proper followup, safeguards for the patient, etc. I am sure that for many Mirapex is useful, and a good tool in the armoury against PD, just like the contraceptives could be for women broken down by multiple pregnancies. But for a very significant minority of people the side-effects are unsustainable and everything says, over and over again, in so many cases against these companies, that THEY KNEW THE SIDE EFFECTS and failed to keep people informed, or deliberately withheld information in their scramble to make big bucks. It simply is not true that such cases will scare off the investors in research, to my mind it only redresses the balance a tiny amount. That is how it is presented so that FEAR decides things over good thinking and rationality.

For every successful case there are hundreds, maybe thousands in the US who will never be compensated for their suffering, and for every class action in the States there are thousands upon thousands of people worldwide who neither have the resource or the empowerment to even complain......and then there are those who never even get near ANY treatment, because medicine is so beyond their means.............. the overinflated prices of drugs, the poor production methods in unregulated countries, all this is wrong, millions of people know this, why should these companies be protected from their own fallibility, why should they not be held to account for their greed...... it is the successful cases like this that signal that things need to change.

I have been following some of the recent posts that express frustration with things like fragmented representation for people with PD, and the way that resources are not used well; some of the other discussions around PD communities and needs too, aren't these the things that should be right up there at the top of the agenda, and isn't the reason why they are not because of this culture of money only flowing one way.......

There does need to be a new ethical paradigm within the pharmaceutical and medical world, things need so much to change. I do not think that the big pharmas with their emphasis on profit should be in control of the health of people worldwide, the question is not who should be in control, but how can it be wrested from the profiteers and put in the hands of people who believe in being responsible to the end users of their products. Ultimately that will only happen when there is more pressure put on them, not less, if it hits them in their pockets then they will have to change. In the meantime we need to shout louder...............

Lindy

[smithclayriley]

ol' cs, thanks for your thoughts. I wonder what other neurotalk members and readers who live in various parts of the globe think about the necessity of your idea of the USA controlling the world's chemical and drug industry. .

It does not make sense to me, in fact any control of this kind is frightening.

And the insurance companies already won't touch you if you have PD - and that just ain't good enough either. Yeah, it would shake things up to start holding those holding those golden eggs to start being accountable. That will be difficult for all of us.... But this is only the beginning, and things will get far worse - and soon - unless we develop the moxie to look at how things really are, and demand accountability and justice.

We are not denied medical in Canada but forget about applying for any private health or sick benefit insurance to protect, say your mortgage, medical costs, cost of living. You can't get vehicle insurance coverage unless you fess up about your medical condition and then 'they' want to re-test you every year. I complained that I was being profiled by writing a letter to the Superintendent of Motor Vehicles and it worked, I got a clearance for 5 years. Like Fiona says one cannot turn a blind eye to injustice.

Bonnie

[smithclayriley]

ol'cs,

I will assume you were not one of the unfortunate pwp who was taken down by this drug, Mirapex. Three years later I'm still trying to stabilize. The toll it took emotionally on myself, my family and former partner is unmeasurable. I won't even get into the monetary cost to myself because it's over and others lost much more than I. I will tell you this, I could never go through something like that again.

Thank god an award was finally forth-coming, it gives me hope.

Bonnie

[paula_w]

Lindy, Very well said and thanks for telling it like it was. If we don't speak up - it may be rough and inconvenient for us, but deadly for many around the globe.


cs, I thought about possible reasons why I would not like these awards or lawsuits. I came up with -

Unfortunately, these lawsuits will possibly be used as "reasons" for future halts or cancellation completely of drug development. [as vioxx was used in the gdnf case]
They are unique, in that they are about behavior. There are many impulse control behaviors, like the use of the computer. In some situations, it might be which came first, the behavior or the drug? Should I sue for the loss of my marriage and family unit because I am punding too much on the computer? The literature focuses on gambling - there are many other behaviors. The computer is like gambling - in that it provides hits of gratification, that are strong enough for one to keep going after more.
I would love to see the court documents. I would like to know who testified in favor of the company. This thought is followed by a perfect flip flop in thinking that pitches me right with Fiona, Lindy and SCR calling for justice. We may never know who is right - but I'd like to know how they all behaved trying to determine the conclusions.

paula

[Fiona]

wow, guys thanks for the responses - marvelous to hear all your thoughts.

In terms of scaring off new investors - most drug company budget allocations for R and D are miniscule compared to let's say marketing and advertising, and most of the groundbreaking work comes from situations that are paid for by the taxpayers anyway. Plus, they haven't come up with any thing really curative, shall we say, in 40 years. Did a nice job with the HIV-AIDS thing - not curing but at least making life possible and bearable. Most of the 'new drug development' is let's move one molecule in Claritin before its patent runs out so we can repatent it and call it Pristique or whatever. This, after raising the price of Claritin 13 times in four years?????????

My doctor did tell me as she prescribed Mirapex to me in 1999, "this one has some psych effects. You're going to be up at night cleaning closets...." So it seems they knew something. What I didn't know is that my entire personality would change from a responsible person who paid my way and balanced my checkbook to someone who completely lost control of her own and her family's finances, lost at least tens of thousands of dollars thru impulse spending, took on some very inappropriate behaviors that put me at great risk, and many other things that have subsided now that I am finally off that stuff. And they say up to one-third of patients experience some of these symptoms...

What slays me -amongst other aspects - is how business is usually all unhappy about 'government intervention' but then takes tax money to develop their products that they then want to control the prices and have exclusive deals for, and then turn around and say "Well it was the Feds who should have made us divulge what we already knew was a major problem with our product even before marketing it...."

This is hardly responsible behavior.

[smithclayriley]

Paula,

Most neuro's use to think the same thing, that somehow obsessive behaviour was a prior problem. My credibility came into question making it harder to get the help I desperately needed. .

I had never experienced hallucinations and delusions even in the 60's trying the odd recreational drug. I thought birds were flying into my roof and the outside door was opening and closing. I had never peed in a bowl in my bedroom because I couldn't walk. I had never froze for hours at a time wondering why I was still sane and why I was not in a hospital. I had never lost 25 pounds in three weeks. My own GP doctor did not recognize me. It sure helped my case getting disability benefits. My own children thought I was dying.

The fact that I did a 48 hour stint on E-bay, a website I had never visited before and started bidding for the oddest things was unusual for me. I now own English riding boots.......was that for the horse I was going to buy down the road? I bought a leather fringe jacket and a fringe vest along with a full length fringe wool skirt....Annie Oakley here I come! Seven vintage night gowns, one was so vintage the thing ripped when I put it on (cotton can go rotten), nine sets of high thread count cotton sheets (thank god I managed to cancel 2 sets).........and I could go on. It was not just E-bay, I bought from Sears, Home Hardware, Canadian Tire, bookstores, drugstores and from many other on-line websites. It was fun going to my mailbox every day.

Mirapex chemically messed with my brain and once I stopped taking it the on-line buying stopped immediately. I couldn't even look at a flier without feeling sick to my stomach, now I am simply dis-interested.

I left my former, David, because I was too sick to be in a relationship. Hard choice but I intrinsically knew that I needed to figure out what was going on and try and get better. David, who is still a dear friend came to visit me while this was going on and found me asleep at my kitchen table with my face in a bowl of ice cream. When he woke me I did not know where I was or what was going on (he cried when he left). I managed to stumble off to bed only to find myself later that night in my bathroom in complete darkness, coming too, knowing that I had a fall. That is all I remember but I must have hit my kidneys because I had serious blood in my urine for one week and lessor for the next two weeks.

I have babbled on enough but it is important to me that people understand that drugs affect everyone differently and it was a known fact that Mirapex caused problems in a certain percent of people. I kept telling my neuro and his health team what was going on. I was told I could lower my dose from 9 Mirapex a day to 8. I am sure being involved with a Clinical Drug Trial had something to do with that decision. He also said maybe you are getting worse. An under statement not lost on me.

Bonnie

[bluedahlia]

This is hardly responsible behavior.

Sorry for the snip but couldn't resist this one. Maybe they're on mirapex. hehehehe!

Seriously though, this drug did a number on me. Being relatively healthy all my life, I never for one minute thought that my irresponsible behaviour was connected with the drug. Bellyaches and headaches were the extent of any drug induced side effects that I ever had experience with. Imagine my surprise in 2003 when the Stacey report came out. Imagine my further surprise when my gambling obsession disappeared after stopping the drug.

Should the drug company pay for my 2 years in hell and the next 5 of suffering dealing with the repercussions of having taken the devil drug.......Hell Yeah!!!!!!!!

I'm not a non-entity and deserve the life I would have had if not for Mirapex. My suffering is as real as anyone else's, including the lawyers, CEO and shareholders of the drug companies.

[ol'cs]

Just because i think that the drug companies should not be responsible for an individual's self destructive behavior, that i've never been under the spell of mirapex, I complained years ago when we were actively discussing this on this forum. Mirapex turned me into a zombie, but instead of blaming all of my problems on Mirapex, i just STOPPED TAKING IT. What about free will? What about restraint? It's that old excuse "the devil made me do it".
Sorry, but if you take a drug that shows obvious bad side effects, there is nobody putting you in a headlock to take the damned poison. And if you can't control your behavior, then why should you be given millions of dollars for living beyond your means?
Sorry, but gambling and other compulsions is a personality disorder. Millions of people have pissed away their future and expect others to give them more to support their obsessions. Our society is the most litigious on earth. There are reasons why doctors and lawyers are the real bandits here. Sure, just ignore the doctors warnings and if you need more money, just blame a drug company for all your ills and sue them.
Big bad drug companies. Come on. Everybody is responsible for their own behavior.

[paula_w]

Geez Bonnie, it's amazing how we all dealt with things while on this brain drug. When I was on MIrapex, I liked it, felt better and it kept me from going on Sinemet for several years. I did go on the computer at about the same time that I went on mirapex.

This led to traveling with money I didn't have and meeting many pwp -and I still haven't stopped. It was completely out of character for me as a married teacher, cheerleader mom, et al...Was Mirapex involved? It's too difficult to sort out. I was dealt a hand that changed me forever by meeting mjf online and having the delightful experience of "coming out of the closet" and talking about it to him many nights online, as he had just come out too. Please don't view this as boasting or I won't be able to relate anything about it in context with our topics; it's very important in trying to figure things out because it was a majorly POSITIVE EXPERIENCE that has enabled me to cope and stay well. I didn't miss a beat when I retired, instead went on to something I liked better.

Mirapex had also just come out - brand new. 1998. I didn't notice mental changes from going off mirapex. So did the positive emotions, the giggling, belly laughing, wit, surpises and friendship with MJF and gang override anything that mirapex could have done? I was lucky - the need for something to fill a need or compulsion that may have arisen from MIrapex came to me in another form by pure chance....

But my family didn't survive as an unit and we are still trying to work out relationships.

So when I read about 8.2 million being granted. it's not that i don't believe you...I do...and because i am now so advanced, my compassion for my fellow pwp grows daily. I've seen friends get into catastrophic situations with gambling and shopping.

Its natural for a company to fight for itself. I would like to know what medical researchers who are supposed to be curing us are really doing to help us. Putting mirapex out of business back then would have cost me six years before taking sinemet. That means by now I would quite possibly have had to have a DBS, as it is unlikely that sinemet is going to do it for six more years for me. But one never knows.

Going after those who have harmed us will keep us angry and alive awhile and it must be done. I just hope the awards are not so unreasonable as to cause public opinion to go against the patients who were the victims, or to keep other meds from being developed.

Bonnie - you went thru hell - and i'm sorry that it happened.
paula

[bluedahlia]

Just because i think that the drug companies should not be responsible for an individual's self destructive behavior, that i've never been under the spell of mirapex, I complained years ago when we were actively discussing this on this forum. Mirapex turned me into a zombie, but instead of blaming all of my problems on Mirapex, i just STOPPED TAKING IT. What about free will? What about restraint? It's that old excuse "the devil made me do it".
Sorry, but if you take a drug that shows obvious bad side effects, there is nobody putting you in a headlock to take the damned poison. And if you can't control your behavior, then why should you be given millions of dollars for living beyond your means?
Sorry, but gambling and other compulsions is a personality disorder. Millions of people have pissed away their future and expect others to give them more to support their obsessions. Our society is the most litigious on earth. There are reasons why doctors and lawyers are the real bandits here. Sure, just ignore the doctors warnings and if you need more money, just blame a drug company for all your ills and sue them.
Big bad drug companies. Come on. Everybody is responsible for their own behavior.

The point is, I DID NOT realize it was the drug. I DID stop it as soon as I found out there was a connection between the drug and the behaviour. The behaviour happened slowly with titration. I was on Mirapex for 3 years, 2 of which were hellish. I'm sure there are many out there, just like me.

[chasmo]

A british billionaire recently remarked "if you say "good morning" at 5 minutes after noon in the US, you will be sued".
ON the other hand, we have a tort system that allows the "Little guy" to extract justice from the riich and elite.
I have a hard time believing that the makers of Mirapex did not have a clue about this behavior even when it was in trials. After all isn't that what trials are for?? I bet you the cost of litigation was measured against the possible profits. AFter all, these folks are in the business to make money and they are not dummies.
I think punitive damages are out of control. The law should reimburse you for monies lost and a percentage for pain and suffering beyond that. It should not however, be viewed as "winning the lottery". Thats my .02 cents worth.

Charlie

Charlie

[reverett123]

1- The companies knew and deliberately made a decision to keep quiet.
2- The patients, as some here have noted, did not know until it was too late if at all.
3- Compensatory damages should reflect the damage. Punitive damages, however, are to make sure it doesn't happen again. A thousand dollar fine gets my attention. It takes far more to do the same with these behemoths. These companies have more money than most countries. And the only way to get the stockholders (the owners) to demand responsible behavior from their employees (managers) is to cause them financial pain. Punitive means punishment. Not a slap on the wrist, but a "I'll not do that again" response.

[Fiona]

Well, I think the question of free will is a good one. I personally hang on to the notion that my brain isn't completely addled, no matter what meds I've been on....BUT ol' cs, it isn't always that easy to just 'quit' mirapex. I was hospitalized in the emergency room the first time I tried to switch over to another med. Finally now after months of panick attacks and scarey episodes, I think I am finally clear of it but it took all my courage and will, and resources that I know others don't have.

Sure, some money to compensate for whatever would be nice but mainly I would like to see these companies be held accountable.

Got more to say - Bonnie, you are a laff riot - you should see my collection of wire, er....things. Oh, and the yarn.... but horrified that you had to go thru that....lindylanka - so nice to hear from you and thank you for your moving contribution to the conversation today. I have been thinking of your words all day...

[smithclayriley]

ol'cs,

I DID QUIT TAKING IT as soon as I realized it was definitely the Mirapex causing all the problems, and I DID IT IN NINE DAYS. That is the emergency plan set out by the Mayo Clinic, cut a third every three days.

As far as expecting restitution for all my loses, I am not suing or joining a class action suit because my dear, I just don't have the strength or will. So I will suck it up as they say. For those who demand to be compensated for their lives being destroyed I say thanks from me. What I contribute is by being verbal, as I'm sure you are noticing.

Bonnie

[smithclayriley]

Paula,

Thanks for recognizing the difference, that for some it was and is a good drug and has helped them have a better life: whereas for others it had the opposite affect. I respect your opinion and am interested in both sides. Thanks for your compassion.

Bonnie

[smithclayriley]

Fiona,

I am not even going to ask what the heck the wire was for..........As for the 60's and recreation drugs I may have given the impression I did not experience the 'White Rabbit' which of course I did, that was the whole point.

Bonnie

[smithclayriley]

Charlie,

I see your point as well. Like Paula said, and others, it is a two sided coin.

Bonnie

[rosebud]

I could not let this opportunity to add the thoughts of my addled brain to the fray. In defence of the side of this argument that declares we live in a free country and are therefore operating under the "freedom to choose" banner, I must say that I agree. Ignorance is not a defense. And if it were we'd be in serious trouble. I take mirapex, and I see some behaviours that I know are compulsive, and I do believe I have reached the max dose of this particular drug that I can handle without going over the edge. I am a sugar junkie, and a shoe junkie. However I know myself well enough to know that those are weak links in my peronality...and there are probably more. Those are my weaknesses, and have always been there. This drug simply highlights them, and enhances them.

As a counterbalance I also have a solid foundation upon which my life is built. Call it my belief system, or my philosophy of life or whatever. When I find myself getting off track I know what I need to do to get back on track. Keeping a journal of my behaviors is a great tool. (Here come the journal lecture....) We may be a crazy lot, but we are not stupid. Keeping a record of what I do from day to day has been an incredible asset to monitor my own patterns, feeling and behaviors. As we age, and get further down the road most of us cannot even remember what we did yesterday. But a record of what we did yesterday, and the day before can show emerging patterns. Then we can see that we have a problem before it gets out of control, and look at likely causes.

We live in a society that will steal anything it can from us. We MUST assume personal responsibility to survive .Mirapex is not an evil drug, but it does have the capacity to release demons that reside in (all of) us. Know your demons! Learn from your experience, and the experience of others. Build yourself a solid foundation of high end values and then work like hell to live it. Any Questions?

Personally I think the guy must have had a few bucks left over after his gambling spree. because he obviouly got himself one hot lawyer to get that kind of settlement. :Viking:

[jeanb]

Rosebud

I, too, was compulsive on Mirapex -- although it was fairly "benign." It was working on the computer - photoshop to be precise. Day and night - I was always creating something.

I finally titrated off Mirapex and got my brain back. Now I'm back on it - at a VERY low dose.

But you also wrote something that is key for all pwp:
We MUST assume personal responsibility to survive .

It's easy to play the blame game and complain about drugs, or the disease, or that others are not doing enough, or whatever. Yep there is bad stuff out there. We need to be mindful and careful.

But for me the bottom line is that we all need to assume personal responsibility for ourselves in order to survive.

[bluedahlia]

not to be offended because it's human nature for many to judge.

I was diagnosed with breast cancer. The only people that can understand what I go through on a daily basis are other breast cancer survivors. The same analogy can be applied here. And so, I will have to tell myself, that the only people that can understand what I go through on a daily basis because of the negative effects of Mirapex, are the ones that were affected like I was.:)

Personal responsibility is a two-way street. The drug companies have a personal responsibility to right the wrong THEY ARE RESPONSIBLE FOR.

[paula_w]

I hope I didn't judge, because it doesn't change anything. I am worried a little about how we will be "punished" for their [industry] mistake, if you get my drift. Don't mean to judge.

gotta take a break,
paula

[bluedahlia]

I hope I didn't judge, because it doesn't change anything. I am worried a little about how we will be "punished" for their [industry] mistake, if you get my drift. Don't mean to judge.

gotta take a break,
paula

No worries Paula. "They" could have avoided all of this with a two cent warning sticker on the prescription bottle. "They" chose not to. Should we be sheeple because they are pulling all the strings?

It's just a little disheartening when fellow parkies, who suffer daily with this insidious disease, have no empathy for their brothers or sisters who have had to deal with financial burdens, on top of everything else, through no fault of their own.

Please don't go anywhere. You are valued and I respect your opinion.

[paula_w]

Oh heck yeah - unfortunately I"ve run into that problem with other pwp issues. This is the first forum I've seen actually try to deal with differences of opinion in a better way and I hope it continues....thanks....you have had it rough. Who needs breast cancer and Parkinson's? But you have to cope and you do. It stinks tho.

paula


No worries Paula. "They" could have avoided all of this with a two cent warning sticker on the prescription bottle. "They" chose not to. Should we be sheeple because they are pulling all the strings?

It's just a little disheartening when fellow parkies, who suffer daily with this insidious disease, have no empathy for their brothers or sisters who have had to deal with financial burdens, on top of everything else, through no fault of their own.

Please don't go anywhere. You are valued and I respect your opinion.

[leonore]

hey. So sorry so many of you were victims of Mirapex. I just reluctantly started once-a-day ER Requip, so that Stalevo wouldn't have to be upped anymore, to reduce bad dystonia.. I've avoided agonists thus far, since they made me so sleepy back in '99-2001 that I gave them up, to avoid falling asleep on my therapy clients. And too much Provigil makes me jumpy.
. So who has bad Requip stories? I'd like to go in with open eyes. Supplementing with mucuna and glutathione, but still....not sure I should go up on my initial 2 mg. of Requip, to 4 mg., which I was supposed to start today.
I go to Cape Cod on vacation for our family's annual 2 weeks tomorrow. That should at least make me feel a bit better. Still, it's my first time there as a truly disabled person: no longer driving everybody everywhere and being an independent bi-ped will be really hard. These days I use a walker even when I'm "on," and need a "chaperone" everywhere in case I switch "off," which happens five or six times a day. This sucks, is all I can say. Still, I know I'll be trying to do my underwater bicycling every day in the freshwater ponds and on the bay with my purple styrofoam noodle. And reading on the beach.
Have fun stirring up trouble in Atlanta, my friends! Leonore

[reverett123]

No horror stories but thought the data might help. I've been on it since diagnosis in 2000 with no problems other than sleepiness. I am currently taking 24 mg daily which is the max recommended but I have self-prescribed as high as 32 mg daily. I am unusually tolerant of it and trust it more than I do sinemet (which is kind of like saying that I trust Bush more than Cheney :D ).

[rosebud]

Dear bluedahlia: please don't be offended by my opinion. It is merely and only that...an opinion. We each see life through the prism of our own experience. "Judging" others is my last intent, and who am I anyway that my words can carry such weight in another persons life. You are right of course ...they could have put a little sticky label on the bottle. I my case, my Neuro warned me and monitors me. "forgive us our trespasses as we forgive those who trespass against us"....

:hug: Joy

not to be offended because it's human nature for many to judge.

I was diagnosed with breast cancer. The only people that can understand what I go through on a daily basis are other breast cancer survivors. The same analogy can be applied here. And so, I will have to tell myself, that the only people that can understand what I go through on a daily basis because of the negative effects of Mirapex, are the ones that were affected like I was.:)

Personal responsibility is a two-way street. The drug companies have a personal responsibility to right the wrong THEY ARE RESPONSIBLE FOR.

[bluedahlia]

No worries. I agree with "We each see life through the prism of our own experience."

Take care.

[leonore]

thanks. Well, I'm on 2 mg for a week, and sleepy, a bit. !! Yikes--24 mg seems like alot! I know, it's all so person-specific. That's good news, though, and great that you're doing so well on it. Thanks. I totally get your analogy,too--what a shame that we have so many bad med's to choose from, though. But what a pleasure to see the Bush/Cheney crowd run out of town, altho' soooo much toxic waste in their wake.....Later, Leonore

No horror stories but thought the data might help. I've been on it since diagnosis in 2000 with no problems other than sleepiness. I am currently taking 24 mg daily which is the max recommended but I have self-prescribed as high as 32 mg daily. I am unusually tolerant of it and trust it more than I do sinemet (which is kind of like saying that I trust Bush more than Cheney :D ).

[Fiona]

Leonore, have a great vacationn, hon.

Rick - that's very interesting about Requip...it's true that every body is different.

But the free will versus evil drug thing -my personality totally changed. My behavior was way different than it had ever been. And my doc just saying to me as she prescribed it, "you're gonna be up cleaning closets with this one,"
was hardly adequate warning for the mental confusion and change that resulted in me. Never a drinker before, I became not an alcoholic, but someone that got into reckless recreational drinking and carousing to the point where I found myself being raped in the back room of a hardcore gay bar. Sorry to have to be so harsh about this stuff, but I'm talking serious personality change and inability to act appropriately. I was not like that before or since, so I take issue I guess finaly with the idea of personal demons - if something does stir up personal demons, then that's very serious side effect, and since they knew about it, we should have been told, too. And at that point when you are that confused, it's hard to just make a decision to just stop it and be different. It causes a sense of mania, which can be hard to recognize and address.

I disagree that there are no evil drugs. Drugs that seem to have built into their design addictive properties that ultimately worsen and hasten your condition at the same time that somebody is making tons of money from your being on it forever, when they never warned you that once on it, you couldn't get off of it..........and if not inherently evil in themselves, the way drugs are administered in the US surely is reprehensible. Just how much more expensive they are here - Stalevo cost me 1/8 the price in Colombia, South America. And no, it wasn't a fake.

US citizens, I urge you to consider the role of the pharmaceuticals in our society. Once again, we have by far the most expensive health care system in the world, but the worst record of the industrialized nations in preventable deaths - those that could have been prevented by timely and effective care.

We are like 42nd in world ranking in life expectancy, and 35th or something in infant mortality. Yet our system costs more than twice as much as any other...Why? Where is all that money going? With all our resources, I think these figures are just shocking, and anybody who doesn't read them and not think that there's a very serious situation - basically we're being totally robbed and at the expense of our health... We need major change and the need for it becomes more obvious daily.

That's why hearing about the Mirapex verdict felt like better than dopamine. It felt just a little bit like the people who have been jerking us around (oh, it's the FDA's fault for not making us warn people what we already knew was wrong) - were starting to - just a little bit really so far -to reveal that they've been cynically manipulating the public for years. Now they're finding out that mammograms cause or spread cancer more than they detect it - hello, it doesn't even take a scientist to figure out that something blasting you with radiation 1000x greater than a chest x-ray might be a tad dangerous?

Who are you guys feeling sorry for the drug companies trying to protect? They're laughing all the way to the bank. I know it's so disheartening, especially when we need this medication to survive, and we want to believe that it is actually 'medicine,' as the pharmas speciously refer to their products. But it's making us dependent, not more healthy, and the only real chances we've seen out there for a cure have been halted inexplicably in their tracks, others forbidden to pick up the ball, and the key players have 'moved on.'

I really think we have to unite and say we're not going to take this crap anymore. Forget about appeasing this organization or foundation or medical institution, or drug company, and say we PWP make public DEMAND that Amgen release the licensing rights on GDNF if they're not going to pursue it, DEMAND that if our nation's top doctors are sitting on a patent on something that they have done research on and already know it's a good thing and already widely available - that we BE TOLD that information. We should be demanding FULL DISCLOSURE of all researchers, names of who did what work for what industry. Finding out that one of the world's best neuros wrote papers for the welding industry so that it could be proven that welders didn't need protection, received a quiet $3 million for that work, and then lo and behold, it seems that he was on the Financial Disclosure Overseeing Body at his hospital.... Why are we taking this lying down?? Where is it getting us?? What do we get - thrown a bone like a new Neupro patch every coupla years? C'mon... We are paying TOP DOLLAR and what are we getting that is so hugely advantageous?

To me, that's what taking personal responsibility is - demanding truth, integrity and fairness in the way I am treated.

[smithclayriley]

Re: Mirapex

The saddest thing for me while I was going through the Mirapex take-down was that I was so sick that I couldn't spend time with my mother who died last October at 87. She was in a assisted care home 270 miles away, lonely for my company as I was hers. I hardly saw her at all the last two years of her life when she needed me the most. I finally made arrangements for a ride to Victoria to surprise her on a Thursday, she died Tuesday, two days before I got there.

The appalling behaviour from my health team, one being a neurologist I had been seeing for ten years to suddenly decide I was a difficult patient and didn't know what I was talking about (I kept telling them what was happening to me) was the last thing I expected or needed. He told me that one of the reasons I was picked for the Clinical Drug Trial was because I was an organized, credible person. It was all about his ego.

When he saw me after I lost the 25 pounds he had one of his assistants telephone me to tell me that he had empathy for me and realized I had been through a very rough time. I was told to be kind to myself, that the way back was going to be slow and would take a long time. Too little, too late.

Interesting enough my GP showed me a warning letter sent out recently from the Movement Disorder Centre, that he heads, warning doctors who were treating patients with pd to be aware of the adverse affect Mirapex had on a certain percent of patients. Too late to prevent what I went through.

Bonnie

[annefrobert]

Arvid Carlsson , swedish winner of the Nobel Prize in Physiology or Medicine 2000

Interview in Nature (http://www.nature.com/nature/journal/v447/n7143/full/447368a.html):
Neuroscience: The molecular wake-up call
Another side effect of L-dopa treatment is that patients may develop an irrational tendency to gamble.
It is now well known that the neural pathways controlling behaviours such as motivation and feelings of reward pivot around dopamine.
These pathways drive pursuit of food and sex — and are hijacked by addictive drugs and addictive behaviours such as gambling.
In the 1960s, Carlsson was among the first to spot that drugs of abuse work by boosting dopamine transmission
in particular brain areas.
Too little dopamine in one area produces Parkinson's, too much dopamine in others can cause psychoses.

Nature 447, 368-370 (24 May 2007)


Nobel Lecture in December 8, 2000, at hall Adam, Karolinska Institutet, Stockholm (http://nobelprize.org/nobel_prizes/medicine/laureates/2000/carlsson-lecture.html).
“A Half-Century of Neurotransmitter Research: Impact on Neurology and Psychiatry”
The whole lecture is great, and among all, a scheme of repartitition of dopamine, norepinephrin and acetyl-choline in brain dated of 1966.


As PubMed gives evidence-based demonstration..
first works about role of dopamine in reward circuitries, addiction and compulsive disorders were held in the late 60's -early 70's


Ernst AM, Smelik PG. (http://www.ncbi.nlm.nih.gov/pubmed/5973232?ordinalpos=554&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_RVDocSum)
Site of action of dopamine and apomorphine on compulsive gnawing behaviour in rats.
Experientia. 1966 Dec 15;22(12):837-8.

Snyder SH, Taylor KM, Coyle JT, Meyerhoff JL. (http://www.ncbi.nlm.nih.gov/pubmed/4319649?ordinalpos=550&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_RVDocSum)
The role of brain dopamine in behavioral regulation and the actions of psychotropic drugs.
Am J Psychiatry. 1970 Aug;127(2):199-207

Stein L. (http://www.ncbi.nlm.nih.gov/pubmed/4939380?ordinalpos=2552&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_RVDocSum)
Neurochemistry of reward and punishment: some implications for the etiology of schizophrenia.
J Psychiatr Res. 1971 Aug;8(3):345-61

Lippa AS, Antelman SM, Fisher AE, Canfield DR. (http://www.ncbi.nlm.nih.gov/pubmed/4590600?ordinalpos=2548&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_RVDocSum)
Neurochemical mediation of reward: a significant role for dopamine?
Pharmacol Biochem Behav. 1973

As for hypersexuality

Andy OJ, Velamati S (http://www.ncbi.nlm.nih.gov/pubmed/727768?ordinalpos=37&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_RVDocSum).
Temporal lobe seizures and hypersexuality. Dopaminergic effects.
Appl Neurophysiol. 1978;41(1-4):13-28. ]

Vogel HP, Schiffter R. (http://www.ncbi.nlm.nih.gov/pubmed/6685318?ordinalpos=36&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_RVDocSum)
Hypersexuality--a complication of dopaminergic therapy in Parkinson's disease.
Pharmacopsychiatria. 1983 Jul;16(4):107-10.

Uitti RJ, Tanner CM, Rajput AH, Goetz CG, Klawans HL, Thiessen B. (http://www.ncbi.nlm.nih.gov/pubmed/2575449?ordinalpos=35&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_RVDocSum)
Hypersexuality with antiparkinsonian therapy.
Clin Neuropharmacol. 1989 Oct;12(5):375-83.


.......Other evidences may be found too upon sites selling chemicals tablets or plants with "specials" for people searching for higher resistance for gambling or huuuuuuuuuge sexual performances...



And I think to myself.... what a wonderful world........

[annefrobert]

PRE-EMPTION


If this perverse legal doctrine, known as federal pre-emption, continues to spread,
the public will be deprived of a vital tool for policing companies and unearthing documents that reveal their machinations...........
The Dangers in Pre-emption , N.Y.Times April 14, 2008

http://www.nytimes.com/2008/04/06/washington/06patch.html?ref=opinion
http://www.nytimes.com/2008/04/14/opinion/14mon2.html?_r=2&ref=opinion&oref=slogin&oref=slogin
http://content.nejm.org/cgi/content/full/358/18/1883

http://www.duanemorris.com/alerts/alert2812.html


Yes I think to myself .......what a wonderful world....

Anne.

[CTenaLouise]

MIRAPEX sucks!
even though many were hurt and killed because of Mirapex -most patients
usually do not know they have been put on a bad trippin drug - because the doctors whom they trusted, did give them a prescription!
and the drug companies who hid hid the "real clinical study findings"
are all part of the problem

truth in labeling
means nothing to a board of directors who invested in this drug!
they are giving it to highschool kids for restless leg syndrome...
:eek:

[shcg]

No horror stories but thought the data might help. I've been on it since diagnosis in 2000 with no problems other than sleepiness. I am currently taking 24 mg daily which is the max recommended but I have self-prescribed as high as 32 mg daily. I am unusually tolerant of it and trust it more than I do sinemet (which is kind of like saying that I trust Bush more than Cheney :D ).

"Trust it more" is so out of character for you. What do you believe is the advantage of taking requip at all if you are also at a point of total dependency on sinemet? Originally it delayed sinemet dosage increases. Might be protective? I've told myself that Requip "potentiates" sinemet. That taking less sinement is good by blinding myself to the unknown effects of requip. I really have no concrete reason for taking requip at this point.

I have also been on Requip since dx in 2000. 30 mg daily with "good" tolerance. I have also maxed out on sinemet. I want to eliminate requip as an unneeded drug that I just got "hooked" on unless someone comes up with a good reason why I need it.

[Dave A]

Hello - I am sitting here in the dark pondering my failing marriage, my various addictions (gambling, sex on line, baseball cards??, fishing, etc). I am scared and do not know where to turn - except to demand of my Dr. that i be taken off of mirapex and hope that i can start to rebuild my life...

Oh, how rude of me.... I am Dave, 46 yrs old and have been on mirapex for years...


Sorry for the snip but couldn't resist this one. Maybe they're on mirapex. hehehehe!

Seriously though, this drug did a number on me. Being relatively healthy all my life, I never for one minute thought that my irresponsible behaviour was connected with the drug. Bellyaches and headaches were the extent of any drug induced side effects that I ever had experience with. Imagine my surprise in 2003 when the Stacey report came out. Imagine my further surprise when my gambling obsession disappeared after stopping the drug.

Should the drug company pay for my 2 years in hell and the next 5 of suffering dealing with the repercussions of having taken the devil drug.......Hell Yeah!!!!!!!!

I'm not a non-entity and deserve the life I would have had if not for Mirapex. My suffering is as real as anyone else's, including the lawyers, CEO and shareholders of the drug companies.

[CTenaLouise]

I want to Welcome you to the Neurotalk PD forum,
all I can tell you -is that I was once where you are now, -yet no one knew
what Mirapex caused, I went threw my own hell, as you are experiencing
in your own way - I am truly sorry -
copy the article and give the 8.2 million dollar law suit, to your counsel...
the marriage had a 50/50 anyway - and my divorce was horrid -
and my spouse was a louse... do not mean to ryhme at you,
but please - take it slow - perhaps marriage counseling...
I am only giving you abit of hope - in the reality of life...

just do not be afraid - not now - get help and tell your doctor on the mirapex -what has happened to you, and get off the drug/ however the gambling habit with it bells and lights - of reward training, is going to be rough
so sign off the casino's, and you will not be able to go back...

I was offered a hand up out of my real life - horror
and I am offering you the only advice I have experienced -
give me your hand - I will pray for you...
many of us have been there, and we do understand...

:grouphug: