Where we are at and where we are going at Parkinson's UK

1. is 8 years old and is about self medication and addiction to drugs
2 the perecentage is of all pwp not those on DAs
3. 8% of people on DAs have a gambling addiction - doesnt include other effects
I find it hard to believe that some people still dispute the terrible effects of DAs on many patients despite the extensive research papers, successful law suits in other countries, the MHRA warnings in 2007 to all health professionals about the extent of the problem. I can't find the energy to post links yet again but here's one. The Mayo Clinic research and statistics has never been challenged to my knowledge.
GSK has recently been accused of bribing doctors in China to prescribe their drugs .it has been found guilty of illegal activities many times ( google legal action against GSK)
Should their chief executive have been advising our government?
GG

Parkinson's Drugs Linked to Behavior Problems in Study
Posted 30 Mar 2011 by Drugs.com

TUESDAY, March 29 – Parkinson's disease drugs called dopamine agonists appear to cause impulse control problems in almost one-quarter of patients, says a new study. Previous research has linked dopamine agonists, which include Mirapex (pramipexole) and Requip (ropinirole), to impulse control disorders, such as gambling addiction and hypersexuality, and to compulsive behaviors, such as binge eating, overspending and excessive computer use. In this study, Mayo Clinic researchers analyzed Parkinson's disease patient records over two years. "What we found was that as many as 22 percent of patients during that two-year period had a new-onset impulse control disorder," lead investigator and neurology fellow Dr. Anhar Hassan said in a Mayo Clinic news release. The higher the dose of dopamine agonist, the more likely a patient was to develop an impulse control disorder, the researchers found. ... Read more

Related support groups: Parkinson's Disease, Mirapex, Requip, Sinemet, Ropinirole, Azilect, Emsam, Levodopa, Bromocriptine, Pramipexole, Carbidopa, Cabergoline, Selegiline, Parlodel, Amantadine, Dostinex, Stalevo, Requip XL, Sinemet CR, Neupro
Sorry!
i am not very good on the computer. i have just relised the rest of the exerpt has not copied.
the full Mayo Clinic paper goes on to say that 1 man in 2 under the age of 50 is badly affected. thae medical profession widely accepts these figures I believe.

"The higher the dose of dopamine agonist, the more likely a patient was to develop an impulse control disorder, the researchers found.

"One in four patients who were on a medium therapeutic dose of the medication had an impulse control disorder. For patients who were taking a higher range of the medication, about one in three developed an impulse control disorder," Hassan said.

The study was recently published online in the journal Parkinsonism and Related Disorders.

Patients taking dopamine agonists and their families need to watch for any behavior changes, Hassan said. Reducing the dose or going off the medication usually resolves behavior problems within a few days to a month.

More information

We Move has more about drugs used to treat Parkinson's disease.


Posted: March 2011


Read more at http://www.drugs.com/news/parkinson-s-linked-behavior-problems-study-30426.html#Z0qTstk2QdLZcCRk.99
As mentioned before, there ARE people who have not been diagnosed with Parkinson's who DO have obsessive behaviours, who do have gambling problems, who do have hyper sexuality needs, who do behave in ways regarded as being not the norm. If we are to accept that DA's can cause problems that did not previously exist within a patient, then we must also accept that there is a large amount of the world population who have compulsive disorders from a young age and/or developed it at some point in their lifetime.
I'd go further and say if we all sat down and thought carefully we could find at least one obsessive behaviour in every one of us.
For example from as long ago as I can remember I have had an intense dislike for squint paintings/ pictures hanging on the wall in someone's house or a restaurant , the desire to go and straighten it could sometimes be overwhelming.
And no I'm not saying that DA's haven't affected some PWP, but unfortunately for those who have suffered it is difficult to prove when so many of the population have these disorders and DON'T have Parkinson's !
If you read the Mayo Clinic research findings they refer to NEW ONSET OCDs.
This means they did not suffer from them before taking DAs.
Many people without Parkinsons suffer from mobility problems, stiffness etc
It is irrelevant in Parkinsons research into these difficulties
PDUK accept the DA/OCD link and publish useful information and advice.
The drug companies have been forced to add warnings to patient leaflets after the MHRA studied the evidence.
I am at a loss to understand why some people who are lucky enough not to suffer in this way cannot accept the reality.
I doubt if your picture straightening, Kyloe, would lead to the loss of your life's savings or your relationship with family and friends, or yourmarriage.
This is the reality for at least 1 in 4 of us on DAs or caring for them,
GG
I
GG

I have taken this stance before.

You are right about everything you say. Your research is excellent, but it is not the total picture.

I do not dispute much of what you say, and I have great sympathy for people who are affected by this terrible dysfunction. I do NOT deny it happens.

But you cannot expect the people who are going to be liable to not defend themselves. They will look to muddy the waters, producing conflicting statistical evidence as I have done. I am not doing it to be vindictive or horrible. I am doing it to ask you to understand how difficult this matter is.

You might want it to be cut and dried, but it isn't.

As it is at the moment, the medical world in the UK seems well aware of these possible problems caused by DAs, and I agree absolutely that PDUK should be involved with the educating all medical staff with this problem.

But, what do you want? Education, justice, compensation, punitive measures?

What's the point of getting the law involved?
Thank you for your considered reply, Spam.
To answer your question, I want all 4...to prevent it happening to others and to help put the ruined lives back together.
The law is the only body which can award these.
The GSK company have made it clear to me that they will not lift a finger to help unless ordered to do so by a court.
They do not dispute that their drugs have caused these horrors but say that anyone who carried on taking them after 2007 when they were forced to add a short , inaccurate warning to their leaflet, accepted the side effects.
My husband, after 7 years on the drug was effectively insane by then and incapable of admitting to his secret life. His consultant offered no warnings and denied the drug was responsible even when it all blew up in our faces in 2010. He enjoyed many summer "lecture tours "in exotic countries at GSKs expense.if you agree the evidence shows the drugs are to blame,how would you suggest we proceed?
I feel we have exhausted all avenues and are sentenced to live out the last years of our ruined lives without money, trust or hope.
Gg
Hi Spam

Have I got this right Spam? You are now accepting the much larger estimates of anything from 17% to 22% of people affected adversely by these drugs. The effect on some people of d.a.'s and the impact on the dopamine system is so well accepted now that they even put the warnings on the Sinemet packs now in the four years since my dx. although as far as I know the incidence of compulsive behaviour with levodopa therapy as contrasted with the dopamine agonists is pretty low.

The emotive issue of whether we as human beings have free will or are at the mercy of our environment seems to me to be at the root of the fiercely held opinions on this subject. If people subscribed more to the old adage "There but for the grace of God go I", it would help.
Thank you for your support Eileenpatricia.
I would just add that the research gives 25% t0 33% as the number of patients suffering and the full Mayo article goes on to say 50% of men under 50.
If a drug blinded this number of patients can you imagine the reaction.
I feel I could have coped with blindness better than this.
GG
Golden Girl, can you give a link to the mayo clinic article please, or pm it.

I had been to citizen advice, they said they would write to creditors for me stating the reasons. I gave them the details, press articles mainly.

I recently went back for a review an I mentioned the letter hadn't helped. I got told there was no letter sent out as there was insufficient evidence.

The last sentence in the http://www.ncbi.nlm.nih.gov/pubmed/17013907 abstract says it all for me.
(I was going to copy paste, but its copyright).

Also does anyone have a link that states they knew in 1998/2000, they knew of the problem, but didn't list it as a side effect.

Any help in this regard would be gratefully received.

Does 'uman rights not cover this sort of thing before mr Cameron relieves of this, the most basic right of all.

Spam, I kinda agree with you, i hate "blame" as much as the next person. What do you do when there is
A)no remorse
B)no apology
C)no effort to put it right

I'll tell you, no in fact, you tell me how you would be feeling if it were you. Not only did I lose my life savings, I lost my partners life savings, at a time when I'm incapable of earning that money back. On top of that I'm expected to make up those savings again out of my benefits to pay those I still owe money to: to whom I am full of remorse, sorry and am still trying to put it right 7 years on.
I have messaged you privately, dear Eck but here's a useful one.

http://www.yourlawyer.com/topics/overview/mirapex

About Mirapex mostly but includes all Das.
X
https://www.google.co.uk/search?q=mayo+clinic+research+2010+dopamine+agonists+and+obsessive+compulsive+behaviour&ie=UTF-8&oe=UTF-8&hl=en&client=safari

Take your pick!
This is a very detailed selection of research findings, many mentioning that by 2000 many companies were aware of problem OCDs being uncovered.
Good luck!
GG
X
https://www.google.co.uk/search?q=mayo+clinic+research+2010+dopamine+agonists+and+obsessive+compulsive+behaviour&ie=UTF-8&oe=UTF-8&hl=en&client=safari

Sorry, can't seem to make it appear as a link!maybe you need to type..".mayo clinic 2010 dopamine agonists and obsessive compulsive behaviour "into a google box.
X
http://www.yourlawyer.com/topics/overview/requip

Keep finding useful links,Eck.
Will keep looking....but wondering why there is so much legal action going on in other countries and nothing here despite all our efforts.
X
Thanks gg I'm off to purchase some more ink for the printer and a few reams of paper. Not enough evidence?

You are right gg. The contrast of the number of legal firms offering to take on clients to take up a case for those affected. Here I phoned the Scottish law society. They looked up yell.com.

Only one said I had a case, then put the frightners on saying it would cost £100,000, which you could lose and the same again to cover their costs, I had noting left, which was a problem. It would take years, stress, etc. it cost £250 to open a file just to get that advice!

Others sucked through their teeth. Some looked and said, "it's going to be difficult bot prove you were insane". Was that a compliment?

Some debts have been passed to legal firms, even they don't help. You'd think it in their interest, but no. The only interest they show is the interest they want to pile on each month.

If our left legs fell off and the drugs company knew, deliberately withheld info for 6 years and I had a pot of money. I assume I'd maybe have a case.? Maybe?
I am so sorry I can't offer any advice or hope, Eck.
I know nothing of debt regulations but I wonder what going bankrupt involves?
Presumably the Citizens' Advice lot explained the implications of this course of action.
I only know 1 friend who did this and it wiped out all his debts but he couldn't get a credit card for years.
PDUK are still dragging their feet in offering advice and finding out why none of the class suits are pursued here despite so much success elsewhere and NO Spam, we are not asking them to fund such a case, just to get a legal firm to mount one.
I think GSK count on the 3year rule.
Once you pass the magic number of years after finding out the cause of the OCDs you are barred from taking legal action.even if you spend the 3 years as I have done trying unsuccessfully to get someone to sue them.Heads they win,tails we lose.
Thank God we all have each other.
Love
GG
http://www.guardian.co.uk/business/2013/jul/22/glaxosmithkline-admits-bribery-china

To anyone still in doubt about GlaxoSmithKline's illegal activities.
GG
GG
I found the link to the article summarising the situation very clear and interesting. I can't believe any neuro could or would dispute the link and slowly the information is spreading more broadly.
I looked at your other links and wished they were not all Nth American which is known for its litigious health care system. Australia was mentioned but I couldn't find other countries. The situation in Europe would be interesting and perhaps give more indication of the way things have been handled in systems with more similarity to UK. Perhaps there are posts on this so I will now go and look!
The link refers to 23 May link to article and the situation refers to legal cases in Europe rather than those taken by Nth Americans.

Roll on forum upgrade where we can refer to what we are answering!
23 July!

How i wish there was a delete or amend button! This is so 20th century!