Sorry forgot the link
http://www.youtube.com/watch?v=3oNkYNVdsio
J.
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GoldenGirl:
Leigh Day in London and Hugh James in Cardiff are 2 law firms currently building up class actions against dopamine agonist manufacturers. They're already pretty heavily loaded with cases, though.
However there are strict time limits in force, e.g. between the date you first discovered the drug was to blame for the altered behaviour and subsequently bringing the law suit, and also between the date the drug was first shipped and the patient taking it.
You will need to stump up cash up front, even though this should be less due to it being a shared action. However such fees are sometimes covered by household insurance policies.
Finally if your problems resulted from the negligence of a consultant, who may have failed to pass on the manufacturer's printed warnings, this would not be the maker's fault. Yoy would therefore need to sue the NHS or consultant - possibly all 3.
Ray.
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GoldenGirl:
Leigh Day in London and Hugh James in Cardiff are 2 law firms currently building up class actions against dopamine agonist manufacturers. They're already pretty heavily loaded with cases, though.
However there are strict time limits in force, e.g. between the date you first discovered the drug was to blame for the altered behaviour and subsequently bringing the law suit, and also between the date the drug was first shipped and the patient taking it.
You will need to stump up cash up front, even though this should be less due to it being a shared action. However such fees are sometimes covered by household insurance policies.
Finally if your problems resulted from the negligence of a consultant, who may have failed to pass on the manufacturer's printed warnings, this would not be the maker's fault. Yoy would therefore need to sue the NHS or consultant - possibly all 3.
Ray.
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Its been several years since this issue first hit the airwaves, and its still as clear as MUD.
In 2010 the situation we have is as follows;
Massive variances between drug companies in what they are claiming.
Complete disconnect between independent research figures and the drug companies.
Confusion with information on the PUK website, depending where you look!
Different information on other sites like the NHS and NICE.
Massive range of awareness and engagement in the world of Neurologists.
THIS MAKES THE TASK OF FINDING A LIFEBOAT ON THE TITANIC SEEM QUITE SIMPLE BY COMPARISION TO THIS CONFUSION.
In 2010 the situation we have is as follows;
Massive variances between drug companies in what they are claiming.
Complete disconnect between independent research figures and the drug companies.
Confusion with information on the PUK website, depending where you look!
Different information on other sites like the NHS and NICE.
Massive range of awareness and engagement in the world of Neurologists.
THIS MAKES THE TASK OF FINDING A LIFEBOAT ON THE TITANIC SEEM QUITE SIMPLE BY COMPARISION TO THIS CONFUSION.
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Just a note from the other thread:
The latest figures, published on this forum today, quote a 17% OCD rate for DA
takers and a further 7% for patients on other PD drugs, particularly L-Dopa.
Thus 24% [about 1 in 4] of PD patients on prescribed medication are affected by OCDs. This means that 29% of those who do suffer OCDs are actually on NON-DA drugs.
Ray.
.
Just a note from the other thread:
The latest figures, published on this forum today, quote a 17% OCD rate for DA
takers and a further 7% for patients on other PD drugs, particularly L-Dopa.
Thus 24% [about 1 in 4] of PD patients on prescribed medication are affected by OCDs. This means that 29% of those who do suffer OCDs are actually on NON-DA drugs.
Ray.
.
Now I'm really panicking!
What if my husband comes off the DAs and is one of the 7 per cent who have the same side effects on the Leva dopa that he's replacing it with?
What else is available!
What if my husband comes off the DAs and is one of the 7 per cent who have the same side effects on the Leva dopa that he's replacing it with?
What else is available!
hi goldengirl,
It might reassure you to read the report which these findings were based on. The research summary findings can be found on The Archives of Neurology website. When you go to the homepage search; ICD in parkinsons disease (ICD stands for impulsive control disorders). You will find 3 studies have been done, in 2006, 2007 and May 2010. Its the May 2010 study you need to look at. If you click on "Abstract" this will give you a one page summary of the findings. You can of course order the full report if you wanna shell out $30 and need some serious bedtime reading.
The report clearly states 6.9% pwp who experienced OCD issues while taking levodopa based drugs were; Younger PD sufferers, on high dosage, unmarried, smokers and had a family history of gambling problems. I am not dis-missing these conclusions for one minute. However if compared to DA's the 17.1% of pwp who developed OCD issues, were across all age groups, married and single, smokers and non smokers. Some but by no means all had a family history of OCD issues. The conclusions i drew from the Study was; People are far more likely to develop OCD issues (nearly 3 times more likely) on DA's than levodopa based drugs.
No drug is ever going to be 100% safe, but at least this sort of info gained from the study, allows us to make an informed choice. It would be nice to think every Neurologist in the UK was as informed by this latest study.......maybe that's just wishful thinking on my part!
It might reassure you to read the report which these findings were based on. The research summary findings can be found on The Archives of Neurology website. When you go to the homepage search; ICD in parkinsons disease (ICD stands for impulsive control disorders). You will find 3 studies have been done, in 2006, 2007 and May 2010. Its the May 2010 study you need to look at. If you click on "Abstract" this will give you a one page summary of the findings. You can of course order the full report if you wanna shell out $30 and need some serious bedtime reading.
The report clearly states 6.9% pwp who experienced OCD issues while taking levodopa based drugs were; Younger PD sufferers, on high dosage, unmarried, smokers and had a family history of gambling problems. I am not dis-missing these conclusions for one minute. However if compared to DA's the 17.1% of pwp who developed OCD issues, were across all age groups, married and single, smokers and non smokers. Some but by no means all had a family history of OCD issues. The conclusions i drew from the Study was; People are far more likely to develop OCD issues (nearly 3 times more likely) on DA's than levodopa based drugs.
No drug is ever going to be 100% safe, but at least this sort of info gained from the study, allows us to make an informed choice. It would be nice to think every Neurologist in the UK was as informed by this latest study.......maybe that's just wishful thinking on my part!
Hi can someone explain what is the difference between Madopar and dopamine agonist? I have been on Madopar for 2 years and this week was commenced on Rotigotine patches. 2 days after starting I developed a severe hip pain. i dont know if this was just coincidence. I dont want to take drugs which affect my mood. the consultant didn't say what to expect, just that they would give me a boost.
Thanks blueeyes 47
Have spent a couple of hours with our Parkinson's nurse and decided to tell consultant my husband is going to stop the DAs completely, despite his advice to stay on the lower dose of 12 mgs, and go on to Leva dopa.
We feel reassured by your advice and hope the new year brings some improvement to our situation and everyone elses trapped in this nightmare
Still struggling with withdrawal symptoms and have e-mailed Leigh Day twice but no response.
Have a lovely Xmas...you deserve it! And the same to all those who have helped us in this forum.
Goldengirl
Have spent a couple of hours with our Parkinson's nurse and decided to tell consultant my husband is going to stop the DAs completely, despite his advice to stay on the lower dose of 12 mgs, and go on to Leva dopa.
We feel reassured by your advice and hope the new year brings some improvement to our situation and everyone elses trapped in this nightmare
Still struggling with withdrawal symptoms and have e-mailed Leigh Day twice but no response.
Have a lovely Xmas...you deserve it! And the same to all those who have helped us in this forum.
Goldengirl
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Hi GG.
I know Leigh Day are up to their eyeballs.
Might be worth trying Hugh James in Cardiff.
Ray.
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Hi GG.
I know Leigh Day are up to their eyeballs.
Might be worth trying Hugh James in Cardiff.
Ray.
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Interesting article)Dec 13th) on www.medscape.com about lawsuits against the manufacturer of Mirapexin(pramipexole) in the US.So far one case ended in the jury awarding the victim $8.3 million, but of course the manufacturer(boehringer-Ingelheim) is contesting the findings and taking this to a higher court. Apparently, prescribing physicians have not been sued, yet, but the article warns that this is just a matter of time.
Musicman,you write: "I don't want drugs that affect my mood", well, the problem here is that PD itself will affect your mood, because dopamine plays a major part in your mood. So you wil have to try and strike a balance between the low levels caused by the disease or high(er) levels of it, thanks to the drugs you take. Don't forget that the drugs aim to relieve a number of PD symptoms, some of which can be very debilitating.
Madopar is not a Dopamine agonist, it is or can be a very effective drug for most patients for several years with few side effects.
Madopar is not a Dopamine agonist, it is or can be a very effective drug for most patients for several years with few side effects.
While I was on DAs my mood could change from ecstasy to suicidal in a split second, for no obvious reason. Not sure if others had the same experiences.
Hi Ray I haven't experienced any compulsive behaviour has stated before.That doesn't mean to say that things may change the longer Im on DAS.What I would just like to ask, does any of the medics ,when you do get any side affects with any medication take any notice.I find that I get asked the same questions every time I see them,and what ever answer I give nothing is done, other than upping my meds.Then when experienced rashes, teeth dropping out ,water infections low BP They say it isn't the meds.Myself and husband have just given up with the system
how soon can you go on madopar? been dx has early onset,would this be a probelm?
Hi Janine
My o/h was started on Madopar on the day of DX, as they felt would help symptoms he had very good effect from it which enabled him to carry on working for 6 years longer than expected which was good, hope all goes well for you must be frustrating at the mo ? x
My o/h was started on Madopar on the day of DX, as they felt would help symptoms he had very good effect from it which enabled him to carry on working for 6 years longer than expected which was good, hope all goes well for you must be frustrating at the mo ? x
Hi Bubble
i see the nurologist next week on the 23 dec ,so i will mention this to him and hope for a good feedback.thankyou for that info ,i had terrible side-effects from da,s.
take care
i see the nurologist next week on the 23 dec ,so i will mention this to him and hope for a good feedback.thankyou for that info ,i had terrible side-effects from da,s.
take care
Angel4u:
I think your experiences of being ignored, "experts" having made up their minds about your next step even before you arrive, and steadily having dosages increased are probably the norm for most PwP - certainly me.
Don't give up on the system, though, find a more competent consultant. You're entitled to a second opinion, and also to permanently change consultants if you wish.
Don't be intimidated by their arrogant noses in the air. They may think they know it all, but probably most of us in here know more about our subject than they do!
Ray.
I think your experiences of being ignored, "experts" having made up their minds about your next step even before you arrive, and steadily having dosages increased are probably the norm for most PwP - certainly me.
Don't give up on the system, though, find a more competent consultant. You're entitled to a second opinion, and also to permanently change consultants if you wish.
Don't be intimidated by their arrogant noses in the air. They may think they know it all, but probably most of us in here know more about our subject than they do!
Ray.
Thanks Ray
i have had my PD dx queried 1 year after being prescribed DA. I believe other forum members have experienced the same? One would imagine the DA would be gradually withdrawn. In my case it has been increased, even before further tests are carried out. I wonder if there is any information available re possible side-effects of DA's on people who are not in need of a dopamine helping hand? Did I read that some people use them as recreational drugs? (sounds unlikely)
The side effects are just as likely if you don't have PD. As a result DAs ARE used recreationally for their libido-enhancing qualities. Presumably those who get no such effect try them once and give up. Presumably also, those who get the libido effect are also likely to get into gambling problems etc.
Dangerous territory.
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Dangerous territory.
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