Where we are at and where we are going at Parkinson's UK

About Parkinson's and health Impulsive and compulsive behaviour
81

Dear all,

just wanted to share my recent experience of coming off ropinerole and sinemet as an inpatient at neuropsychiatry ward of the national neurological hospital queens square, London.

i am a 34 year old male diagnosed at 30 with symptoms from 27 living and working in London. i was admitted voluntarily recently to hospital (above) to be weaned off ropinerole which i was addicted to and self-medicating. i was on 24mg XL (3 x 8mg per day) and 4 x 100 sinemet i was regularly taking more ropinerole (lied to get extra prescriptions) as and when i needed a hit mainly due to work (furniture maker) and was as a result basically on a path to destruction and possibly suicide which i had considered.

fortunately for me i was saved (literally) by the neurology team i see at the National and my family, i cannot stress seriously enough the destructive path i was on with ropinerole, i ticked every behavioural side effect box and the ropinerole changed me as a person affecting all aspects of my personality and behaviour it was causing me to ruin my life and bring as much down with me as i could, but it worked wonders for my motor symptoms and i felt great the hit i got from taking it was so powerful i absolutely loved it.

but all this led to me spending 4 weeks in the psychiatric ward at the national probably the best thing that has happened to me during my relatively short time living with parkinsons. i resisted admission as best i could but luckily i still had a touch of clarity to my thinking that i realised it was absolutely necessary, i was so paranoid and my mental capacity was so affected that i would have been sectioned sooner rather than later i had even developed a darkness to the periphery of my vision which has now gone. the neuro team whilst trying to persuade me to admit, were convinced that i would do something "catastrophic" within weeks if i stayed on the DA.

i know everyone has such different times with parkinsons but i am now on amantadine, stalevo and an anti anxiety combined with behavioural therapy, exercise and meditation and i literally feel like a new person but actually just the old me not the "ropinerole me"

thanks  

 

 

82

Dearest Cantona99

I am so sorry you have suffered like this.

There is no reason why this horror should still be inflicted on patients after years of reports from distinguished research bodies about the side effects of DAs.

Where were the warnings  and monitoring from the medical practioners. The drug company who made 7.6 billion pounds last year?

Why are 1 in 4 patients on Requip/Ropinirole suffering catastrophic psychiatric disorders like this, and 1 in 2 under 50 on a therapeutic dose?

My husband suffered in a similar way, Cantona, and with help, much like you, he has slowly returned to a more normal mental state.

After 3 years , his physical symptoms are better controlled than ever but it has been a long struggle.

I do wish you all the strength and will to return to a good place.

So much of what you write is so familiar and plunges me back into the nightmare.

How many more ruined lives before anyone takes notice and comes to our aid?

I will think of you and many will send good thoughts to help you recover.

Love

GG

 

83

Cantona has suffered terribly at the hands of the medical profession and pharmaceutical industries.

Is there any progress in the legal Q and A session looking at possibilities for redress in such cases?

Thanks

GG

84

Hi goldengirl,

As we mentioned in the post above, we're really working to get the forum launched. Once this has happened, we will announce a date for the Q&A. We expect that this will be later in the month and the solicitor has confirmed he is able to do dates this month.

Thanks,

Ezinda

85

I have just read the update re the campaign to raise awareness of DAs and ICDs published on Feb 4 on your home page.

i was perturbed to see no mention of hypersexuality, only gambling , shopping and pounding as side effects of these drugs.

From reading research statistics and members'experiences on the forum It would appear that over 50% of OCD sufferers experience this devastatingly destructive side effect.

Why was it omitted?

Also, I see the report says only a small number of patients are affected by these horrific side effects.

Most people now accept the Mayo Clinics figures of 1 in 4 on a therapeutic dose of DAs and 1 in 3 of men under 50 will experience horrific life- changing side effects, roughly half in gambling and half in hypersexuality, with other addictions playing a smaller role.

A small number? 25 to 33 %?

I think your campaign , although late in the day, is a very useful addition to the fight to raise awareness of the scale of the problem.Leaving out the more unpalatable facts and minimising the numbers  however is unhelpful.

Carers with sexually deranged partners , seeking information, will be left unaware that the drugs are to blame and need urgently to be withdrawn.

Yet again my cynicism makes me wonder if the hand of the pharmaceutical companies is here somewhere, looking for a minimisation of the devastation they have caused in their search for vast profits, from those to whom they give funding.

Sadly,

GG

 

86

I have just re-read the article. ( Sorry, Feb 6 not 4)

To my amazement, I now realise it doesn't even mention Dopamine Agonists as the main culprit!

Only a tiny number of patients on Leva- dopa drugs suffer these side effects and DAs are the cause of the vast majority of cases. The effects are dose-related and become more and more likely as the dose increases.

In whose interest is it to give such a watered-down innacurate account of the situation?

 

87

Hi goldengirl,

We’ve passed your message to Suma, we’ve asked her to get back to you as soon as soon as possible - which should be early on next week. 

Have a great weekend.

Many thanks, 

Sophie

88

I agree with GG that the article understates the risk of being affected by side effects. Based on the Mayo clinic numbers you could say that most people who take a therapeutic dose of dopamine agonists don't suffer devastating side effects. That is very different from 'a small number are affected'.

Suma and the gang are doing good work. Improving the number of neurologists who are aware of impulsive & compulsive behaviour is a fine achievement but more is required. 

I suspect part of the problem here is the language we use. If you don't know what hypersexuality means you might think it's fun. 'Sex addiction' is nearer the mark.

I think DAs are great. IF you can tolerate them. Nobody should be prescribed them without a sensible warning about the effects that might happen. If 5% of neuros think they have never seen an affected person that is a worry. That a much larger number of neuros don't screen for risk factors is a greater worry especially if two of the big indicators (young, male) are so easy to detect.

EF

 

 

 

89

The message is certainly getting though in some places. My neuro put me on DAs at first visit - and put the fear of god into me about the OCD. i had to sign a consent form. And every visit, to both neuro and PD nurse is less how's your Parky, more how's the OCD.

S

90

I am so pleased Semele that you and many others are now warned and monitored.

Hopefully fewer and fewer patients will face the ruined life that so many of us did and still do.

When my husband's secret depraved life was exposed in 2010 I received so much information , support and care from fellow sufferers despite their own terrible struggles.

PUK had no info sheets, campaign, support in finding help with withdrawal etc.

I cannot believe they didn't know.... We eventually found the hidden research findings and wrote to MPs, to doctors, told everyone who would listen.

The final nail in our coffin was the Q and A session which made it clear it was now too late for a legal challenge. We had begged PUK to help us by co-ordinating an attempt to involve a legal firm in a class action. They never responded.

All those sufferers no longer post.

Presumably they feel that, as the report shows, PUK will only minimise the terrible harm done to us and the part played by the drug companies who continue to fund PUK.

Only the truth will ensure that no one else suffers as we did and continue to do....the DAs and their side effects clearly shown.

My love to the lost forum members

Ray of Sunshine

Blue-eyes

Libra Lady

Glenchass

Company Pleasant

and many others who struggled to understand how the medical profession and our patient support group, PUK stood by and let this happen.

GG

 

91

Dear goldengirl,

Your post on Friday (and the subsequent ones) has brought up a few points that need a response, so I shall try to do this there.

In terms of only mentioning a few of the possible side-effects observed with impulsive and compulsive behaviour, there wasn’t anything specifically driving this other than limited space and it certainly wasn’t an attempt to downplay some of the any of the possible symptoms of impulsive and compulsive behaviour – which can be many. Due to the limited space we also made sure that the article did have links to pages with more information so if people wanted to find out more, they had the opportunity to do so. 

We wanted to ensure the main point of the article – that there is increased awareness of impulsive and compulsive behaviour amongst consultants and more are being pro-active in managing it – was the focus.

I would not say that we are shying away from hard-hitting issues.  I don’t know if you’ve seen, but the latest edition of the Parkinson features quite a harrowing case of a lady whose husband’s impulsive and compulsive behaviour drove him to bring prostitutes into the family home when their daughter was still very young.  Unfortunately we could not refer to this in the news item because the Parkinson is a members-only publication and so non-members would not be able to see it, however I do think it shows that we are willing to give these experiences a voice and will certainly continue to do so when people are brave enough to share these distressing experiences publicly.

In terms of the numbers quoted, we have been consistent in quoting the study from 2010 by Weintraub et al. (http://archneur.jamanetwork.com/article.aspx?articleid=800232) which at the time was the largest study into this side effect.  Where there are questions about the numbers, we endeavoured to address this as you can see from this forum thread - http://www.parkinsons.org.uk/comment/54135#comment-54135.  

But an important consideration for us is the impact of this information on the reader.  If someone looking at our website or reading our publication reads this cold, it could be very distressing and there is a real danger that people just stop taking their medication abruptly, which could lead to potentially fatal consequences.  I think we have a real duty of care to raise awareness but to ensure it is safely dealt with, which is why the focus of our work has been on making sure consultants prescribing medication are pro-active in bringing up the topic as well as managing it directly with the people they care for. 

We know that impulsive and compulsive behaviour can lead to absolutely horrendous consequences, but also we know that some people take a calculated decision to tolerate some degree of the side-effects because of the benefit that medication gives them in other ways.  Again as long as this is done in consultation with all those affected, including carers, the best place for this discussion to happen is with the prescribing professionals. 

I agree with elegant fowl that there is still work to be done – we want consideration of impulsive and compulsive behaviour to be appropriately part of all conversations regarding Parkinson’s medication with systematic pre-screening.  It is something we will continue to advocate – the recent news story purely tells us where things are now – better, but still more to do. 

The positive thing I see from going to conferences and event is that more and more professionals are taking the initiative in talking to their colleagues about it than ever before.  We can only spread the message so far and will continue to do so – the only way this will become part of normal practice is if consultants and nurses take that ownership themselves and does seem to be moving in the right direction.

Kind regards,

Suma

 

92

Thank you for your reply, Suma.

I appreciate all the work that is going on to raise awareness and get medical staff to monitor side effects.

However, I still feel that the article needs amending.

Hypersexuality is a major side effect and needs to be in the list of those experienced by manys

Keiran Breen  states that the figure for patients on a therapeutic dose of DAs suffering ICDs is 24% , in the link you give...NOT A SMALL NUMBER of patients.

If you are serious about raising awareness it is important that readers are given accurate information.

Perhaps I missed it but I did not see the article you referred to in the latest edition of the Parknson magazine.

But I do value the work you are doing .

GG