Hello all,
We’ve noted that there have been a number of questions and concerns raised again on the dopamine agonist thread and we’d like to update you on what is happening on this.
Firstly, on changing the format of the forum so that this conversation is visible whenever a new person joins the forum—with the current set-up of our forum, this isn’t really possible. We can update the stickies (more on this below) but with the current format we are unable to ensure that a thread stays at the top permanently. Hopefully, this is something that we can change once we have moved onto the new forum and we will update users on the progress of this shortly.
We have also updated the Treatments sticky to highlight the issue and will point new users to it in our welcome email. You can find it here: http://www.parkinsons.org.uk/pdsforum/posts.aspx?forum=treatments&topic=about-the-treatments-forum
At present, you may note that the sticky says “some people” taking dopamine agonists and others may experience impulsive and compulsive behaviours. We have asked the Research team to clarify the research that has been done on the percentage of people on DAs who show these behaviours. We will post this information and update the sticky once they have had a chance to do this.
Finally, we are in the process of hiring a campaigns officer to work exclusively on this issue. If there is anyone on the forum who is interested in applying, you can find the job advert here: http://www.parkinsons.org.uk/about_us/working_with_us/current_vacancies/head_office/policy,_campaigns_information/icb_campaigns_officer.aspx?menupage=7664
For updated information on our impulsive and compulsive behaviour campaign please visit the website at: http://www.parkinsons.org.uk/default.aspx?page=11431
Best regards,
Ezinda
Thanks for the update Ezinda. It's nice to see that our concerns are taken seriously, I and I am ssure a number of others would love to apply for the post but I guess one would need to live in or be able to daily commute to London?
Glenchass
Glenchass
Thanks for this update.
The link you provided to enable people to get an update on the Awareness campaign only re-directs you back to the PUK website homepage? You then got to go searching for it, so would it not be possible to provide a link direct to the campaign info page? Also this link could go on to the sticky opening page thus covering both angles.
best wishes
bluey
The link you provided to enable people to get an update on the Awareness campaign only re-directs you back to the PUK website homepage? You then got to go searching for it, so would it not be possible to provide a link direct to the campaign info page? Also this link could go on to the sticky opening page thus covering both angles.
best wishes
bluey
Thank you for the correction and suggestion, Blueeyes. Both have now been corrected.
Ezinda
Ezinda
The forum team have asked me to post about how widespread the problem of dopamine-agonist-associated behavioural changes are.
A number of studies have now been carried out to determine this. These include problems such as pathological gambling, hypersexuality and abnormal compulsive behaviour.
The most comprehensive study was that by Weintraub in 2010 which examined over 3,000 people and found that approximately 17% of those on dopamine agonists alone, or in combination with other drugs, experienced these problems. A subsequent study by Hassan (of the Mayo Clinic) was published in 2011, although this contained a smaller number of participants (321). The overall results were similar to the previous study with 16% reporting problems.
However, when they looked at people who were on doses of drug that are generally considered as being appropriate for the treatment of Parkinson’s, this increased to 24%.
Analysing studies such as these can be difficult. It is generally accepted that the larger the study, the more accurate the data will be. So as the Weintraub study had 10 times more participants, the results are probably more accurate.
Secondly, the Hassan study found an initial prevalence of 16% of behavioural changes in all people on the medication. This only increased to 24% when they looked at a subset of the participants taking higher doses. So it appears that there is definitely an increase in the rate of the problem associated with higher doses of the drugs prescribed.
It is very difficult to determine exactly how widespread the problem is as there are many factors that can impact on the results obtained. In addition to the direct effects of the medication, we need to consider how many people in the general population actually experience these problems.
One study has suggested that this could be at least 6%. And another study has suggested that people who are diagnosed with Parkinson’s could have an even higher prevalence of these problems even before they are prescribed medication. So, a lot more research is required in this area.
Previous research suggested that people with Parkinson's may be at greater risk of impulsive and compulsive behaviour before they even start medication. But new research published in January 2013 shows that having Parkinson's alone does not increase the risk of impulsive and compulsive behaviour. It's only when people with the condition start taking the medication that the risk increases.
Parkinson’s UK has a number of initiatives in place to address this problem. These include raising awareness among doctors, nurses and pharmacists to ensure that people with Parkinson’s are made aware of the potential problems when they are prescribed the drugs and are carefully monitored for changes in behaviour.
We are also funding research in this area, including a study at the Institute of Psychiatry investigating the potential use of cognitive behavioural therapy to help people who have experienced the side effects. The initial results on a small number of people look very encouraging and we will make sure that any recommendations are made public as soon as possible.
Parkinson's UK-funded research published in February 2013 showed that talking therapy can help people with Parkinson's manage impulsive and compulsive behaviour with 3 out of 4 people in the study benefiting from therapy. You can read more in our news story Talking therapy may help manage impulsive and compulsive behaviour.
I hope this helps.
Best regards,
Kieran
This post was updated on 6 November 2013 in light of new research available.
Thanks Kieran for updating us.
Hopefully newbies will now be able to see this information at the forefront of the treatments section of the forum. Also i would like to see it updated by you and the forum team as and when any new research info becomes available.
On a separate note i feel the biggest concern raised from the Mayo studies, was the increase in numbers affected who were taking therapeutic levels. In particular the significant increase in pathological gambling and hypersexuality behavioural problems is a concern. Pathological gambling (not to be confused with compulsive gambling) is a life changer in terms of the wide spread damage it causes!
I agree with you more studies are needed following the mayo research. However we must in a responsible manner keep this issue in the forefront and not on the back burners.
regards
Hopefully newbies will now be able to see this information at the forefront of the treatments section of the forum. Also i would like to see it updated by you and the forum team as and when any new research info becomes available.
On a separate note i feel the biggest concern raised from the Mayo studies, was the increase in numbers affected who were taking therapeutic levels. In particular the significant increase in pathological gambling and hypersexuality behavioural problems is a concern. Pathological gambling (not to be confused with compulsive gambling) is a life changer in terms of the wide spread damage it causes!
I agree with you more studies are needed following the mayo research. However we must in a responsible manner keep this issue in the forefront and not on the back burners.
regards
I am heartened at the response of the PDUK team to the repeat postings of the research surrounding DAs and OCDs, and the new posting of the 2 video links,
I echo Blueeyes contribution re the need to keep this huge problem at the forefront of the site.
As many patients are now reaching the higher doses, as they have been on it for a number of years, the davastation will surely grow.
Only last September when my husband's secret life was revealed the consultant assured us that the 36 mg a day of requip XL (50% more than the licenced dose prescribed for the last 3 years and high doses of Ropinirole for 8 years before that ) was fine and had no part to play in the horrific behaviour over more than 3 years.He clung to this view for 3 months insisting it was safe to continue.
Only medical intervention, a month in hospital and continuing support from our Parkinson's nurse and a psychiatric team has enabled my husband to withdraw from the drugs and begin to cope with the terrible damage to our lives.GlaxoSmithKline have replied to our letters insisting their leaflet is accurate and warnings sufficient!( rare side effect and less than 1 in 1000)
They need to be stopped from ruining any more lives. How??
I am sorry for repeating previously posted thoughts but so many of us need support from PSUK urgently and others need saving from this life-destroying journey.
I echo Blueeyes contribution re the need to keep this huge problem at the forefront of the site.
As many patients are now reaching the higher doses, as they have been on it for a number of years, the davastation will surely grow.
Only last September when my husband's secret life was revealed the consultant assured us that the 36 mg a day of requip XL (50% more than the licenced dose prescribed for the last 3 years and high doses of Ropinirole for 8 years before that ) was fine and had no part to play in the horrific behaviour over more than 3 years.He clung to this view for 3 months insisting it was safe to continue.
Only medical intervention, a month in hospital and continuing support from our Parkinson's nurse and a psychiatric team has enabled my husband to withdraw from the drugs and begin to cope with the terrible damage to our lives.GlaxoSmithKline have replied to our letters insisting their leaflet is accurate and warnings sufficient!( rare side effect and less than 1 in 1000)
They need to be stopped from ruining any more lives. How??
I am sorry for repeating previously posted thoughts but so many of us need support from PSUK urgently and others need saving from this life-destroying journey.
Hello GG I do hope that your going to take this issue up legally? It's appalling and illegal, that Doctor should not be practicing!!!!
regards
Glenchass
regards
Glenchass
Thankyou PUK for your responses above to ongoing concerns of some people and the interesting report analysis Kieran. As I read it compulsive side effects maybe be relevant for up to 25% of users and it seems to follow that it may not be a significant issue for 75%. While acknowledging the real concerns of those affected and their desire for some changes, I do hope this overall perspective is kept in balance.
hi Ezinda
I just read the updated sticky page under Treatments and one word sums it up!
EXCELLENT!
Well done Ezinda and the PUK team for producing this. It will help highlight the OCD issue to any newbies without them having to go searching for it. Furthermore should negate the need for old threads to be used as a point of reference.
I'm sure other forum members will agree this is a step in the right direction, once again well done.
bluey
I just read the updated sticky page under Treatments and one word sums it up!
EXCELLENT!
Well done Ezinda and the PUK team for producing this. It will help highlight the OCD issue to any newbies without them having to go searching for it. Furthermore should negate the need for old threads to be used as a point of reference.
I'm sure other forum members will agree this is a step in the right direction, once again well done.
bluey
Thanks for that link companypleasant....most interesting.
Radz
Radz
I think this thread should be brought back for new members to read.
I think this thread should be brought back for new members to read.
Surely this should be a sticky?????
Surely this should be a sticky?????
Couldn't sleep last night so I was doing some research of my own and came up with with this little gem.......
which tells us that "Researchers have known about links between Parkinson's drugs and compulsive behaviour since the 1970s".
Oh really?
http://news.healingwell.com/index.php?p=news1&id=531977
Radz xx
which tells us that "Researchers have known about links between Parkinson's drugs and compulsive behaviour since the 1970s".
Oh really?
http://news.healingwell.com/index.php?p=news1&id=531977
Radz xx
Thanx Radz for the link , interesting read. (Shocking really)!!
Yes indeed PB it is scary reading. I have been reading and re-reading different posts and trying to make sense of them the post below had me confused then I came up with the following thoughts.
Dr Breen's only post (on 6/9/11 at 13:56) it is not until I reached paragraph 4 that I realised everything prior to then has been an irrelevant distraction. Paragraph 4 clearly states: "However, when they looked at people who were on doses of drug that are generally considered as being appropriate for the treatment of Parkinson’s, this increased to 24%."
I'm sorry, but are we on the same planet? "...doses of drug that are generally considered as being appropriate for the treatment of Parkinson's" ? What on earth are we trying to establish here, doses appropriate for pituitory tumors? Doses suitable for treating ovarian hyperstimulation syndrome? No. This is clearly a Parkinson's forum, and although dopamine agonists may well be used to treat other conditions, those are of no interest to us here.
It is common knowledge that the doses needed for Parkinson's are significantly higher than for other conditions; thus the likelihood of side effects will be proportionately higher. As a result the figures he quotes in paragraph 3 have no validity, since paragraph 4 indicates that they had not generally been applying doses "appropriate for the treatment of Parkinson's."
In fact the 24% figure is the ONLY figure in the whole post which has any validity whatsoever. Whenever the 24% is mentioned Dr Breen tries to deflect attention away by noting that it only applies when looking at a subset of the participants taking "higher doses." But elsewhere he specifically points out that these "higher doses" refer to doses "that are generally considered as being appropriate for the treatment of Parkinson’s." !
Whenever the lower figures are discussed, Dr Breen is careful to note that they relate to "all people on the medication", i.e. patients who are not involved in PD in any way, but are simply suffering from other ailments (like those above), which only need tiny doses. From OUR viewpoint in the PD world every single research participant who is not a PD patient is dragging the percentage deceptively downwards. Looks good to the drug companies I'm sure, but it gives a grossly inaccurate picture of the scale of this on going disaster.
Obviously results will be more reliable the more participants you involve, at every stage Dr Breen's post rams home the fact that to be effective, dopamine agonist doses for PD patients need to be so high that the result WILL be a 24% (1 in 4) chance of that patient developing OCDs. Or more. [u]Parkinson's is unique in that of all the conditions which can potentially be helped by dopamine agonist medication, IT ALONE needs to ingest the drug in such huge quantities that we get very close to the edge of sanity.[/u]
And 1 in 4 go over that edge.
Dr Breen's only post (on 6/9/11 at 13:56) it is not until I reached paragraph 4 that I realised everything prior to then has been an irrelevant distraction. Paragraph 4 clearly states: "However, when they looked at people who were on doses of drug that are generally considered as being appropriate for the treatment of Parkinson’s, this increased to 24%."
I'm sorry, but are we on the same planet? "...doses of drug that are generally considered as being appropriate for the treatment of Parkinson's" ? What on earth are we trying to establish here, doses appropriate for pituitory tumors? Doses suitable for treating ovarian hyperstimulation syndrome? No. This is clearly a Parkinson's forum, and although dopamine agonists may well be used to treat other conditions, those are of no interest to us here.
It is common knowledge that the doses needed for Parkinson's are significantly higher than for other conditions; thus the likelihood of side effects will be proportionately higher. As a result the figures he quotes in paragraph 3 have no validity, since paragraph 4 indicates that they had not generally been applying doses "appropriate for the treatment of Parkinson's."
In fact the 24% figure is the ONLY figure in the whole post which has any validity whatsoever. Whenever the 24% is mentioned Dr Breen tries to deflect attention away by noting that it only applies when looking at a subset of the participants taking "higher doses." But elsewhere he specifically points out that these "higher doses" refer to doses "that are generally considered as being appropriate for the treatment of Parkinson’s." !
Whenever the lower figures are discussed, Dr Breen is careful to note that they relate to "all people on the medication", i.e. patients who are not involved in PD in any way, but are simply suffering from other ailments (like those above), which only need tiny doses. From OUR viewpoint in the PD world every single research participant who is not a PD patient is dragging the percentage deceptively downwards. Looks good to the drug companies I'm sure, but it gives a grossly inaccurate picture of the scale of this on going disaster.
Obviously results will be more reliable the more participants you involve, at every stage Dr Breen's post rams home the fact that to be effective, dopamine agonist doses for PD patients need to be so high that the result WILL be a 24% (1 in 4) chance of that patient developing OCDs. Or more. [u]Parkinson's is unique in that of all the conditions which can potentially be helped by dopamine agonist medication, IT ALONE needs to ingest the drug in such huge quantities that we get very close to the edge of sanity.[/u]
And 1 in 4 go over that edge.
Gosh Radz, I think you may have a very valid point here.
Well thought through and very thought provoking.
ROS will never be away whilst your around and together you would make a formidable partnership to lead the way forward for a world wide web site!!!!
Glenchass
Well thought through and very thought provoking.
ROS will never be away whilst your around and together you would make a formidable partnership to lead the way forward for a world wide web site!!!!
Glenchass
Only wish I had his knowledge, I am just reading reems of stuff and trying to find a way forward.
I can see what these drugs have done to my brother, his immediate family and then our family and I don't like it one little bit. It's heart breaking. He can't help himself so I am trying to do my best not only for him but for all people who are suffering because of it.
Radz xx
I can see what these drugs have done to my brother, his immediate family and then our family and I don't like it one little bit. It's heart breaking. He can't help himself so I am trying to do my best not only for him but for all people who are suffering because of it.
Radz xx
hi Radz
The point your making is extremely important and is the same one i have been making.
When i looked much deeper into the OCD side effects issue, it was like a tale of "two cities". Its clear many PwP who are not affected by OCD, are taking DA's at a fairly low to moderate level. In many cases the low dosage is only part of their treatment regime the rest being levadopa based drugs. In my experience PwP who take only DA's and at Therapeutic levels, are significantly more likely to develop OCD issues! Research completed at the Mayo clinic put the figure at 24% (1 in 4) when DA's were taken at Therapeutic levels. However from my experience of the people i know who have taken DA's at Therapeutic levels, the OCD impact was at least 1 in 3 if not even higher!
Therapeutic dosage level are the same as "Appropriate" or " Maintenance" dosage levels, just different people use different words to describe it. I have even heard it referred too as a "high daily maintenance" dosage?
The simple facts are whichever of these phrases is used, the daily dosage is within the approved guidelines. Therefore if a doctor was put you on this so called "maintenance" dosage and the info leaflet said the OCD risk was only 1 in 1,000, you would think this very minimal! When in fact the risk while taking DA's at the maintenance dosage is at least 1 in 4, if not much much higher.
I believe the Drug companies need to update there warnings and its about time they reflected the reality in the info leaflets and warnings.
Regards
bluey
The point your making is extremely important and is the same one i have been making.
When i looked much deeper into the OCD side effects issue, it was like a tale of "two cities". Its clear many PwP who are not affected by OCD, are taking DA's at a fairly low to moderate level. In many cases the low dosage is only part of their treatment regime the rest being levadopa based drugs. In my experience PwP who take only DA's and at Therapeutic levels, are significantly more likely to develop OCD issues! Research completed at the Mayo clinic put the figure at 24% (1 in 4) when DA's were taken at Therapeutic levels. However from my experience of the people i know who have taken DA's at Therapeutic levels, the OCD impact was at least 1 in 3 if not even higher!
Therapeutic dosage level are the same as "Appropriate" or " Maintenance" dosage levels, just different people use different words to describe it. I have even heard it referred too as a "high daily maintenance" dosage?
The simple facts are whichever of these phrases is used, the daily dosage is within the approved guidelines. Therefore if a doctor was put you on this so called "maintenance" dosage and the info leaflet said the OCD risk was only 1 in 1,000, you would think this very minimal! When in fact the risk while taking DA's at the maintenance dosage is at least 1 in 4, if not much much higher.
I believe the Drug companies need to update there warnings and its about time they reflected the reality in the info leaflets and warnings.
Regards
bluey