Dopamine Agonists and catastrophic Obsessive/Compulsive Disorders


#601
I find this posting extremely helpful and enlightening if not depressing.The possible side-effects are devastating and we need to help each other stay aware. this is NOT scaremongering just compassionate. Knowledge is power.

#602
Hi

This week 4 people with Parkinson's have settled their claims against GlaxoSmithKline – who manufacture several types of Parkinson's drugs – following them developing impulsive or compulsive behaviour after taking the dopamine agonist, ReQuip

You can find the full details on our web site at

http://talkparkinsons.blogspot.com/2011/11/raising-awareness-of-impulsive-and.html

#603
Thanks Tim
It is good to see the team giving information on the progress of cases against the makers of these drugsand contact details of sources of advice.
My husband and I can't be helped with any legal redress but I hope those who qualify will approach the legal firms who specialise in DA/OCD cases for advice and hopefully more people will be compensated for their suffering and ruined lives.
Good luck and don't give up without a fight!
X

#604
I'm going to buy shares in drugs companies, they have it made - imagine, they have come up with a drug that works on the person's brain so that they are no longer capable of understanding the drugs leaflet and so don't understand to stop taking the drug - and keep taking it, distroying their lives and making more money for the drugs company!!

And this is totally legal and noone is doing anything to stop them.

Maybe I'll just start manufacturing my own drugs :grin: I can make people do all sorts of things and get lots of money for it :grin: maybe I'll make a drug that makes them put all their money into my account, but hey as long as I have a patient leaflet explaining so, and I make the drugs mangle their brains so much that they don't understand I'll make a mint after all there is no law against it :grin: the sky is my limit :grin: never mind the lottery :grin:

In my innocents I ask, why is noone doing anything about this? I can't understand how this is going on for so long without anything being done.

#605
At bloody last. Thank you ROS for making me aware of the possible pitfalls.

#606
I want to express the other side of the coin here.

Firstly it is indeed good news that there has been some legal moves to make sure that the drug companies are deemed responsible for some untoward of people who have taken their drugs. I wish you well with your own lawsuits I expect you to bring to court.

But I don't see the boogie man. These companies are not headed by some demonic, caped men laughing insanely while they rub their hands over a pile of gold coins and green dollar bills. They are scientists and financiers and lawyers who have responsibilities to the patients, shareholders and general public.

They don't want law suits, and they don't want to hurt the patients who take their tablets.

Bringing a drug to market is a major and public business. All the data amassed is available for peer review and, if there was anything obvious, the drug would have been stopped from going into production. In truth, this is the fate of most drug trialed.

I have been directly involved in the world of drug trials and I know how thorough they are.

But I concede things go wrong, and when they do, the drug company should bear the cost.

But they are not demons.

#607
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Thanks for this info, Tim. It's cheering to hear that occasionally someone, somewhere, is making a smidgen of progress against the callous drug masters.

Whilst the pharmaceuticals' researchers - and indeed those working in the independent and consumer sectors - no doubt work in good faith and with unquestionably good intent, they seem to be oblivious to the goings-on in the commercial and legal divisions of these organisations.

These shrewd businessmen employ the best lawyers in the world, and pay them top dollar, to do everything in their power to deny, debunk, decimate and destroy every millimetre of every case put before them - whatever the human cost and irrespective of where blame really lies. That's their job. That's what they're paid to do, and they are exceptionally good at it.

And whenever a respected independent body such as the Mayo Clinic in the USA publishes figures which displease them, the drug companies instigate their own parallel research "studies" which allegedly prove the opposite.

The drug business is worth trillions of dollars, and a bunch of even the very best lawyers costs next to nothing by comparison. Besides which these lawyers save their employers much, much more than they cost.

All at our expense, of course.
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#608
Hello and welcome back again ROS.

In the world of science you have to work with facts.

"The callous masters" can try to distort the facts to their own ends, but the world of science will catch them out in the end.If there is evil intent they will be found out.

Good luck with your quest.

#609
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Hi Spam, thanks for the welcome.

You may well be right that the "callous masters" will be caught out in the end, but "in the end" is of no use to claimants.

Right now the last Thalidomiders are starting to receive compensation for their terrible birth defects 50-54 years ago. That drug was only marketed for 4 years before withdrawal, but there were somewhere between 10,000 and 20,000 victims worldwide. Obviously all these folk are now in their early 50s, and will have lived all their lives so far with enormous difficulties, but zero compensation.

If in our DA/OCD cases "in the end" again translates to 54 years, and we assume an average of (say) 56 years old at initial PD diagnosis, can we therefore conclude we will receive our due compensation at the age of 110? Assuming that none of us will reach that age (or if we do, we won't give a damn by then!) the saga should ultimately cost the drug companies nothing.

RoS.
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#610
Hi Spam,

Your quite right to point out the drug companies are not demons! However if i was to use a metaphor that sumed up the drug companies it would be, Jackal and Hyde!

Doctor Jackal of course being the research and development side of their split personality, with senior management and financial investers often becoming Mr Hyde! In my opinion, profits and shareholder return on investment will always come ahead of acknowledging their mistakes and paying compensation to victims!

So i guess in this case its Mr Hyde who is calling the shots?

best wishes
bluey

#611
ROS, you have provided an excellent reply to my comments and your facts are correct and well written. This is the well researched presentation you need to prepare when you tackle the powers that be.

The Thalidomide situation took so long because the unequivocal proof of the side effects was a long time coming as there wasn't a clear consensus of fault. In other words, you have to prove your facts. When that happens the drug companies will have to concede fault and will pay.

In your case, the scientific evidence is beginning to mount up. The level of acceptance of your theory is increasing but does not seem to me to be universally accepted yet. Your camp has had a few successes but the guidances on the use of DAs is still as it was years ago.

I still maintain that the drug companies are filled with good guys! If there was sufficient proof of fault they would concede. Of course there will be exceptions to my 'good guy' theory!

#612
Can I just add that the makers of Requip accept that the drug causes devastating OCDs.
It is not illegal however to sell a drug that causes horrific side effects.
It is a "defective product" only if a warning isn't given in the packet.
The warning for Ropinirole /Requip appeared in March 2007.GSK had known since the late 90s.
If you carried on taking it after that date.....tough!
All the problems were then your own fault.
And Ray is correct. GSK challenges the figures with research figures of its own and maintains it is 1 in 10 as opposed to 1 in 4.
Good guys eh?

#613
Jackal I do think your analogy of Jeckyll and Hyde is a fair one.

But I honestly think it is true of all big corporations. There are good people in all (except the tobacco firms:laughing:)I have worked in the big corporations and the pressure to keep growth and profits going is overwhelming in them. Its not just the drug companies - its a survival thing in all of them. I do think all thse companies show their Jeckyll side when faced with big legal claims against them.

I would like to make the point though that in the overall market the amount of trials and research for PD is dependent on the big pharmas supporting them and putting in huge amounts of financial support. Even when small pharmas/charities do research/trials work they eventually collaborate with the big pharmas to bring to market. Look at Cogane. A small pharma developed it. They have had to get big charity backing to support the cost of trials. Then they will have to partner with a big pharma to finance Stage 3 trials and bringing to market.

I as a PWP do want the pharmas still to support research/trials or we wont get the cure/better medication all of us need. Its a hard situation -I do want the pharmas to be honest about side effects and pay compensation properly but I dont want them to stop the developement of new treatments!

#614
hi summerskye, yes stupid me of course its Doctor Jekyll not Doctor Jackal :confused:

I recently watched the film "Day of the Jackal" and these days sometimes get confused with stuff? Think it must be my age, or at least that's my excuse anyway! :fearful:

#615
We can, and do, argue eloquently about the side-effects of the DAs. Importantly, the drug companies are dealing with a set of extremely vulnerable people some of whom are also desperate for medical help. I find the atttitude of the consultants very interesting: when they start to question/feel uncomfortable with this, then so do I. Drug companies are interested in profit. The spending power they have available for legal back-up is obscene. I simply cannot buy in to the naive thinking that they have a conscience, patient beware seems to be the order of the day. Forwarned is forarmed.

#616
hi mrs.t,

If they do have any conscience, then it must be the CR (Controlled release) version, a bit like Sinement CR.

The organisational culture in bedded within drug companies is that of Conscience Control Release! I have lots of evidence of research and tests they done way back in the mid 1990's linking DA's to pathological gambling. Yet it took them a further 10 years to acknowledge this side effect via their info leaflets! Even then the only reason they done this was to limit their financial exposure to being sued by patients. I like you 100% believe drug companies put profit way ahead of they admitting sometimes they make mistakes!

regards
bluey

#617
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As I understand it, Company Law obliges the Board of any company to recommend to its shareholders whatever courses of action or policy directions are in the [u]shareholders[/u]' best financial interests.

There is no room in Company Law for sentiment. In fact it is clearly NOT to be considered in decision-making. That's why previously well-intentioned boards (e.g. Cadbury) are forced to recommend unwanted and hostile takeover bids to their shareholders. The latter, of coure, quite like that "chink-chink" sound in their ears....

With such a powerfully negative financial framework as a backdrop, and company law structured so solidly against us, good causes like ours are up against Everest before we've even started.
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#618
I think most people with Parkinsons and their carers want the same thing: drug companies to warn accurately about the side effects of drugs;doctors to know of these side effects and monitor patients carefully; drug companies to compensate fairly any patients who slip through their net and are badly damaged.
No patient intentionally ruins their life and the lives of others.
Hopefully no drug company sets out to allow patients to suffer life destroying side effects.
The financing of the above would hardly dent the billions made from these drugs.
So why is it so hard to achieve?

#619
Because they don't believe you!

I am fat, and it is often stated in public that it is entirely my fault. I eat too much and I exercise too little. But no one can accept fatness as an illness. People are often rude and condescending to fat people.

An alcoholic is said to be unwell and a drug addict is given help. A fat person has only himself to blame!!!!

If you are a neutral and don't understand OCDs then I am sure that most will not be particularly sympathetic to your problems. As they aren't sympathetic to my weight problems.

I have been following this conversation for a long time now. I have seen evidence of those thoughts in the unknowing general public for years now. Your problem is one of perception. A lot of people don't believe that you couldn't have stopped the damage you were doing to your life. Why didn't you just do the equivalent of 'eat less and exercise more".

I believe that your problems were caused by the drugs, but I'm not sure the general public do.

You need to convert the world I'm afraid, from doubters to sympathisers.

I have no idea how to do it, except through FACTS and SCIENCE.

#620
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Even if every person on earth - including drug company directors and shareholders - believed us, I'm 100% certain that they'd still fight us tooth and nail through the courts. They won't surrender a dime if they don't have to.

Pharmaceutical shares are bought and sold in their thousands every day by huge faceless corporations for whom share prices and dividends are the only things that matter. These investors didn't get where they are by caring for the likes of us. They wouldn't buy drug company shares if they thought that company was likely to lose millions on a stack of compensation litigation, with the accompanying mass of bad press.
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