Hello and welcome


#1
We are really pleased to welcome you to the new impulsive and compulsive behaviour (ICB) forum. It's a great opportunity to engage with people around this subject and work together to best influence and raise awareness of this issue amongst health professionals so that a change in attitudes and a consistent approach in clinical management is achieved.

We look forward to the conversations and discussions that will be shared here.
We believe that no one affected by Parkinson's should have their lives ruined by impulsive and compulsive behaviour as a side effect of Parkinson's medication.

Professionals and pharmaceutical companies have a responsibility to raise awareness of these side effects and do all they can to mitigate the risks. Our ICB campaign team is developing strategies and resources to raise awareness amongst health professionals and support people affected.

Just a bit about the involvement of the Parkinson's UK impulsive and compulsive behaviour steering group:

We will post under the username 'ICB' in order to:

- Signpost users to specific news
- Raise awareness of how people can get involved in the campaign

For the first time, we will also have community member act as 'host' for the section. The role of host is to welcome members, provide updates and stimulate discussion within the section.

Though the host will work closely with the community management team, moderation responsibility will remain with the staff.

Our first host, blueeyes47, is an existing member of the community and also a member of the ICB steering group. He'll introduce himself below.

We are looking forward to a lively debate!

#2
As promised we now have a dedicated space on the forum for this topic.

The ICB space is here for everyone, whether your just looking for advise, seeking information or wanting to discuss ICB's (Impulsive and Compulsive Behaviours) medication side effects. Also you will find direct links to other parts of the Parkinson's UK website, which should make it a lot easier for people to find further information and fact sheets on this subject.

Remember the purpose of the dedicated forum space is to provide advise and Support for those who are worried or have been impacted by ICB's. However any forum member is free to post here just as long as its respectful and does not break any forum T&C's.

Kind regards
bluey

#3
:fearful:I'm a newbie and after reading this thread i have to ask , what is a Dopamine agonist i'm newly diagnosed and i'm on Co-Careldopa tabs 25/100 , 1 three times a day , is the cure worse than the disease ? , jonta .

#4
Hello Jonta,

It sounds as if you are on the right path with the Co-careldopa also known as sinemet plus, the agonists are sometimes used before starting on co-careldopa and also used to lenghten the time out between doses of co-careldopa when pwp's have been on Co-careldopa for some years at least that is what we were told. Perhaps some other forum members can give you a fuller answer, but I wish you well anyway.
best wishes
vivian

#5
Hi Jonta
There are two types of drug commonly used to treat the symptoms of Parkinson's. The first type is called dopamine agonist and acts to encourage the brain's ability to create dopamine. Ropinirole is an example of a dopamine agonist.
Your drug co-careldopa is an example of a drug which (roughly) tops up the brain's supply of dopamine.
Your question about weighing the symptoms against the side effects is a good one and it is a familiar issue for many (if not most?) PWP. We all react differently to the condition and to the drugs and we value different things in our lives. This makes the symptoms vs side effects trade off a very personal decision assisted by Parkinson's Nurse Specialists, Neurologists and other PWP.
It is important to know what kind of side effects are possible but you must remember that MOST of them don't happen to MOST people.
The impulse control side effects described in this part of the forum can be devastating to those affected but we think that is still a minority of the people who use dopamine agonists.
The drug you are taking is not strongly associated with Impulse Control side effects. I hope that helps.

Elegant Fowl

#6
Hi there ,
well done elegant fowl you explained the DA's very well.
It is difficult when newly dx with PD to understand about the drugs we take. I knew nothing until I joined the forum about impulsive and compulsive behaviour. So it made me very aware of the medication.
I am on Requip XL 8mg a day. All I can say is that before I was on any medication I really struggled with my PD, so difficult to walk and at 48 years old at the time I felt like an old lady. Needed help out of a chair etc. Have been dx for 5 years and more. I just would not function without these tablets they have not given me back my life but have made me more mobile. And able to continue to work.

Just be aware of the side effects ..

PB x

#7
I wondered if there was an update from the recent conferenc of PDUK which addressed the progress being made in tackling the DA/OCD problem?
Is there any attempt planned to confront the firms marketing these potent drugs with incomplete and inaccurate warnings, and consider the recently publicised behaviour of Glaxo Smith Kline in particular in withholding info on side effects and bribing doctors etc for which they have been fined 4 billion pounds in the USA?

#8
Can you tell me if The neuro Patch Rotigotine is an agonist or not .

My husband was first started on Sinemet at the lowest dose and increased to Sinemet Plus , I can't say that really think they have helped that much about 2 years ago he started With the patches now on 6 mg . I thought these seemed to help his mentalal reasoning He is unable to do very much and needs a lot of assistance .

#9
Can you tell me if the Rotigotine patch is n agonist or not . My husband was first started 6 years ago on Sinemet rising up to Sinemet Plus he also started using the Patch about 2 years ago . I think the patch helps his mental reasing but not sure about the Sinemet . He really struggles and needs lots of assistance

#10
Whoops sorry thought i had lost the first message

#11
Posted - 20 Jul 2012 18:24
Report this post
Re-posting to be sure that it is seen and a response from the campaign team is requested.
I wondered if there was an update from the recent conferenc of PDUK which addressed the progress being made in tackling the DA/OCD problem?
Is there any attempt planned to confront the firms marketing these potent drugs with incomplete and inaccurate warnings, and consider the recently publicised behaviour of Glaxo Smith Kline in particular in withholding info on side effects and bribing doctors etc for which they have been fined 4 billion pounds in the USA?

#12
Hi goldengirl,

Don't worry. You don't need to post it twice.

Though the ICB campaign team aren't at their desks over the weekend, we have seen it. We can pass it along to them on Monday for a response to your question. We'll get back to you then.

I hope you have a good weekend.


#13
how much research (or compensation!) could you get for 4billion? an unbelievable sum. although well deserved, i worry that the people most affected by it will be us.
i wonder what worthy cause the money is going to?

#14
johnnie the patches are indeed a dopamine agonist.its much the same as other DAs. icb (note the new letters) does occur with it. it is particularly linked with dopamine-3 receptors which may be associated with cognitive functions, which would explain an improvement in reasoning. sinimet should do the same but perhaps his dopamine producing neurons have got to the stage where they can't make use of ldopa or the drug may not be being absorbed correctly. or other reasons!
warning - i may be adding 2 + 2 to make 5.
cheers

#15
I wish they had paid off the debts I incurred due to taking DA's out of that 4 million, that would have been peanuts to them, but it sure would have made a difference to me and my family. Just to get the debtors off my back would be heaven!!

I can dream can't I?

Glenchass

#16
Glenchass, it was 4 billion, not million!( but dollars not pounds, I think.)
What is so awful is that this was in America and the British body overseeing drug safety in the UK has no plans to investigate GSK or attempt to sue them as the Americans did.
Why not?
The company made many billions from these drugs before they were caught and the 4 billion is just a drop in the ocean to them.
Who said crime doesn't pay??

#17
Hi goldengirl,
Thank you for your message.

The discussion that took place at the Parkinson's 2012 conference relating to impulsive and compulsive behaviour was focused on the information and support available to clinicians so that they do inform their patients of all potential side effects and monitor them closely.

The importance of involving family members in these discussions was also discussed. You can find further information here http://www.parkinsons.org.uk/icbresources

On the second point relating to the current situation in the USA, this action was related to three specific drugs unrelated to Parkinson’s (the antidepressants Paxil and Wellbutrin and the diabetes drug Avandia) so we have little more information on this than the news reports.

As far as our campaign on this front, we have been heartened by the work being undertaken by the Medication and Healthcare products Regulatory Agency (MHRA) on behalf of European colleagues to make sure that all countries in Europe have the same side effects for levodopa and dopamine agonists listed on their information leaflets in a consistent way.

Their report is currently being reviewed by colleagues across Europe and we will be discussing the outcome with their Senior Pharmacovigilance Risk Management Assessor next week.

We hope this helps.

The ICB campaign team

#18
Thank you team for the update.
I am heartened to hear that some progress is being made in the fight to gain recognition of the DA/OCD problem and prevent lives from being ruined.
I still cannot see why the UK body cannot take action against GSK as many Btitish patients took these drugs.
As for Requip etc there is much evidence that the same corrupt behaviour has taken place ,eg. keeping statistics about side effects from the patients,falsifying information in drug leaflets.. and I am sure evidence could be found that they "encouraged" inappropriate prescribing of these drugs.
Why is the UK so different from the USA when it comes to going after these powerful, immensely wealthy companies forcing them to acknowledge their activities and compensate the victims?

#19
Hi everyone,

I'm Suma and I've just started at Parkinson's UK as the new Professional Engagement and Education Manager. One of the areas I look after is the Impulsive and Compulsive Behaviour campaign. It looks like some good work has already been done - it's my job to build on this and take it forward. Reading through the posts has been really enlightening - this is clearly an issue that has dramatically affected many people's lives. Along with the other members of the Digital team, I'll be looking at what you're writing and seeing where I can help - I'll also keep you updated with progress of the whole campaign.

Overall, my role is raising awareness of what's important to people affected by Parkinson's and the ways in which Parkinson's UK can help to health and social care professionals so that they can provide the best possible care for you. As many of you know, professionals might have variable experience of dealing with people who have Parkinson's - by highlighting issues that people like you have told us are important and by providing ways in which professionals can learn from each other, we're aiming to raise the standards of care for everybody.

Outside of work, I enjoy cooking, going to the cinema and going to concerts. I have a four-year old niece and a nephew who's nearly one (they live over near Bristol and I'm in London so I don't see them as much as I'd like, but Skype has been a godsend) and my superpower would be thinking of the clever thing to say at the time I need to say it and not half a hour later…

Looking forward to working with you all,

Suma

#20
Suma
Welcome! and apologies for taking so long to reply to your first post.
It is good to know that we have more focus on these important issues. I look forward to hearing updates and in particular suggestions of how the inmates of this forum can help you

Elegant Fowl