Spam, I know it is hard to believe but you can look up the entire article published by a well-known and entirely reputable research institution, The Mayo Clinic.Just click here.
http://www.reuters.com/article/2011/03/23/idUS236544+23-Mar-2011+BW20110323
The figure is 1 in 4 of patients taking DAs.
The detailed analysis goes on to show, as Ray says, that nearing the maximum dose the figures are 1 in 2 and younger patients 1 in 3.
No-one to my knowledge has disputed these figures in the scientific world, yet the drug companies get away with their ridiculous " more than 1 in 1,000" likelihood of these side effects in their Rquip leaflet.
Yes, I agree. 1 in 2 IS more than 1 in 1,000, and that makes it an accurate statement!
Whose figures are PDUK using?? And why?
GG

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GG

Thank you for your considered response

I have read and I understand the Mayo figures. This is one set of numbers in a sea of statistics. Yet you continually refer to it as if is the absolute truth.

But I have had this discussion before, with you and others.

I wish you the luck you deserve with your quest. I cannot batter my head against your wall any more.

Best wishes

C

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Hi Spammy.

Many thanks for your not-unexpected negative reaction.

I'm sure the other forum regulars will agree that your past contributions suggest that anything posted by GG or me (or by those sharing our views) would incur your wrath and derision. Even if I were to hypothesise that the sun will rise tomorrow you would argue against it.

Pardon me if I leave you rambling. Suffice to say that the Mayo Clinic in Massachusetts is one of the finest and most highly respected independent research organisations in the world, and their latest published figures (above) have been challenged by no-one.

Regards

Ray
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Don't fritter away your time defending the indefensible.

If there is a problem with the mayo clinics figures you should challenge them.

If the suggestion is I'm alright so it's 100% safe and this outlook of either black or white with no grey areas is what gets you through the day, then more power to your elbow.

If that bothers you, don't let it. For someone who doesn't suffer these side effects you spend an awful lot of time reading and posting about there non existence.

Those of us on the other side have an axe to grind, with good reason, what's yours?

I do hope that we are not going to get into this stalemate situation again. My stance now is to ignore those that, for whatever reason, are unable to grasp the situation that we, the victims find ourselves in. Perhaps they need to try dodging the bailiffs and worrying if they can pay the rent/mortgage as the threatening letters are used to heat the room. It really is a dire situation for many of us and some people just don't seem to understand just how serious it is. It's not just about getting money or financial gain.....I just want to pay the debts that were incurred whilst taking those blooming drugs, is that too much to ask?

Walk a mile in another persons shoes before you judge and have some compassion for those less fortunate than yourself.

Glenchass

Hi all,

Just to address some of the questions you raised.

We use the phrase 'possible' because not everyone experiences impulsive and compulsive behaviour on Parkinson's medication.

Our director of research Kieran Breen recently addressed the reason why we use the statistics—basically because the Weintraub study (2010) is still the largest study on this issue to date. You can find a previous conversation about this here: http://bit.ly/nPNw3w There is also link to this conversation in the sticky for this section. Instead of repeating that conversation, we invite you to take a look at the previous information.

It is true that the patient information leaflets for dopamine agonists provides information that we think is wrong. As blueeyes47 noted in the thread mentioned above, patient leaflets currently say that impulsive and compulsive behaviour occurs in “rare cases” in people taking these drugs (1 in 1000). We have been working to get this changed.

We have spoken to Medicines and Healthcare products Regulatory Agency (MHRA) this week. The MHRA is the body that regulates patient information leaflets. They are currently reviewing whether the information in the leaflets for dopamine agonists are accurate and have invited all EU countries to submit evidence on the issue. This stage of the review will take about six weeks and we expect to get an update from them then.

It will take a few months before any changes are made to patient information leaflets, but Parkinson's UK is very involved with this process.

Sarah

To ICB

Contrary to popular belief, I agree that the warnings on DAs need to change. I also believe that more than 1 in 1000 people get significant problems with these drugs.

But what figures are you trying to get the drug companies to change it to? 1 in 4? Even 1 in 2?....something in between?

This is an important question, as you need an agreed figure to change it to. What is PDUKs estimate of the occurrence of OCDs caused by DAs?

Hi,

We want to make sure that the patient information leaflets are accurate and consistent.

This means we would like to see impulsive and compulsive behaviour in the category of side effects that are likely to affect more than 1% of people. For the purposes of getting change to patient information leaflets, it does not matter if it is 17% of people or 25% of people.

We use 17% for people on dopamine agonists as a figure because it is based on the largest study so far. We also recognise that different studies have produced different results.

Sarah

Hi folks.

The actual percentages are not important here. The point I was making was that Sarah's document makes the following two statements:

"Impulsive and compulsive behaviour is a possible side effect of some Parkinson's drugs", and:

"Only a relatively small number of people experience this behaviour..."

I believe that making these two comments in the very first paragraph severely underplays the scale of the problem, and could potentially encourage some readers to discard the document at that point. This is very dangerous. Whether 17% or 25% it certainly isn't Sarah's "relatively small number." If you apply the 1 in 4 figure to the 120,000 UK PD sufferers, you get 30,000 potential OCD victims!

Whichever independent research organisation's figures are used, one thing is for certain: every time over the last dozen years or so that a new set of results has been published, it shows the percentage of PD patients susceptible to OCDs as being higher than had previously been thought. I therefore feel that based upon those years of experience the Mayo figures are the most likely to be accurate. A simple graph would demonstrate this, no complicated extrapolations are necessary.

Indeed the real figure could ultimately be shown to be 1 in 1 (100%). That is, EVERYONE is susceptible to OCDs from these drugs, the only difference being that different patients have different tolerance levels. One person could completely lose it on 0.5 mg/day, another may need 8 mg/day to trigger the same response. So, as time passes and doses are necessarily increased, all those who currently believe themselves to be non-susceptible to OCDs, and who are thus enjoying the many positive effects of these drugs (and good luck to them), may yet have a nasty surprise in store.


Ray.

Hi,
Has time stood still?Round and round and round we go.Statistics are just numbers arrived at at that particular time.Variation will always continue because basically,the figures are unreliable.They are a comforting assurance and reassurance to those caught on the treadmill of blame,but the conclusions and figures are totally relative and tweaked to satisfaction dependant on the tweakers.
The only thing certain which figures is yourself,everyone is uniquely different.I for one would not categorise myself for instance.I am an individual of my own personal circumstance,life experience.A person cannot be put into a collective,that is just rounding people up to label.Then conveniently featured as a unreliable courtroom figure which,I believe to be a load of nonsense.
Every person treads their own individual path and as such figure as a sole functioning unit.They could sit there and say whatever they want to say,with things unsaid which make a difference to the figures(e.g they had compulsions,considered not unusual before meds,but never mentioned).I think back to numerous things I have done to excess before pd and meds, which would be considered a side effect of my medication now.How many "usual/accepted",compulsive or obsessive behaviour traits,considered to be within accepted bounds by some,but not by others,previous to pd awareness,are now used within these figures, obsessively mentioned here.
Percentage juggling nonsense means absolutely nothing,it's reality that counts.We are all different,give unreliable information,don,t give important information,plus, can be influenced by negative Da figures and infomation.These factors make for false results which only serve to make those regretting their misdemeanors feel justified in their actions.Fuelling their eternal compulsive mission in the revenge seeking behaviour constantly voiced here. Get real.Get over it and try to understand that the DA meds give important relief to many.Some of the side effects are actually beneficial and increase enjoyment in many areas.The warnings are now all in place,awareness is there.Those who don,t want to take them don,t have to and this 1 in whatever figure becomes extremely irritating after a while,make that an eon!!
Don,t let them trample you down Spam 95,
Titan