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

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

Thank you for the correction and suggestion, Blueeyes. Both have now been corrected.

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.

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.

I hope this helps.

Best regards,
Kieran

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

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.

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

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