Dopamine Agonists and ICDs....update?


#1

I am heartbroken that in 2017 new victims are tumbling onto the forum with tales of ruined relationships and lives because of the horrific effects of DAs.

It is now 7 years since the whole sorry mess was dragged into the light with statistics about devastating ICDS, mainly gambling and hypersexuality,  showing the huge scale of the problem.

This week a company is appealing for participants to test an implant of the main culprit...Requip/Ropinirole.

What help has Parkinson's UK offered to stop this greed-driven continuation of prescription of these drugs?

Parkinsons has damaged my family's life far less than the treatment. Many others would say  the same.

There are still neuros denying the fact that DAs can cause this terrible behaviour....how much longer will people stumble into the forum looking for an explanation of why their lives have been shattered?

What can be done to stop this?


#2

The problem here is that the side effects that you describe are flagged up in the drugs data sheet that should be in every pack. They are actually relatively uncommon, but when they occur they can be devastating. 

But if it is in the data sheet, you can’t blame the manufacturers. Doctors should be well aware of these problems as a side effect. So should the patients, it’s in the patient information sheet with the tablets. It’s not a secret.  So where does blame lie? Certainly with the doctor who denies the tablets don’t cause these problems, because the manufacturer says they can. From a legal point of view the duty of care lies with the doctor. If he or she is made aware of the problems, the tablets should be stopped and alternative treatment started.

But neither the doctor nor the manufacturer is responsible for the results of the side effect, if the potential for that particular side effect is cautioned against when they are prescribed. 

You can’t stop these drugs being prescribed because the large majority of people who take them have no problem, and gain considerable benefit.


#3

I know it is hard to understand why this is still a huge problem.

First the statistics....Mayo Clinic  research considered reliable by most ' in the trade'....1 in 4 patients on a therapeutic dose of DAs will experiebce catastrophic OCDs usually involving hypersexuality or gambling.

1 in 3 of men under 50.

Then the side effects...always accompanied by a great ' buzz' from the secrecy and deceit. The behaviour is rarely self-reported as it provides such thrills.

it usually comes to light when bankruptcy or divorce looms....too late to mend the damage.

Never recognised as the side effect they may have been warned about.....often accompanied by devious moves to get more of the tablets.

This is a full-blown addiction.

My husband had to spend a month in hospital being weaned off the DAs which had ruined our lives.

2 years help from a wonderful neuropsychologist kept us alive.

Recently we were contacted by a young neuropsychologist who was presenting a paper on the family destruction caused by these drugs and found most of his audience had never heard of the problem.

The drug companies give false info on the leaflets....Very uncommon side effect ' 'fewer than 1 in 1000.....' last time I looked. Not all neuros warn, most GPS have never come across it.

If a drug caused blindness in so many patients it would be withdrawn.

Drug companies' profits fund doctor's' holidays, political parties, shareholders' luxuries. ...and support organisations.

We don't stand a chance.

 

 

 

 

 

 

 

 

 

 

 


#4

Another useful piece of research...

https://www.national.slam.nhs.uk/wp-content/uploads/2010/09/NP-Steve-Gallagher-Research.pdf


#5

Hi Goldengirl

 

I read this with interest

 

Chris


#6

Hi golden girl

It has been a while since we’ve given an update on this so I’ve checked in with our research and professionals teams.

The study that you might be referring to is an early-stage trial happening in the US. You can find more information about this here: https://parkinsonsnewstoday.com/2017/09/01/titan-receives-fda-ok-to-begin-first-clinical-trial-of-subdermal-implant-for-requip-parkinsons-treatment/

The drugs are beneficial to many as we discussed before, and to withdraw them would seriously limit the drug options for people with Parkinson’s. So, it is a case of taking advantage of the benefits while working to limit the side effects.

Sad to say, there is still evidence that some people taking certain drugs will have impulsive and compulsive behaviour. But we’re continuing to educate professionals about these  side effects so the impact of this behaviour is less damaging.

Importantly, impulsive and compulsive behaviour is now included in the NICE guidelines for the management of Parkinson’s so there is now an onus on doctors prescribing these drugs:

  • to assess whether people taking them are at risk
  • to give information to families and carers of the possibility of these side effects
  • to monitor for the behaviour at medication reviews and
  • to manage any occurrence of impulsive and compulsive behaviour.

This matters because it gives us a new tool to make the case for professionals knowing about this and taking the right action to protect people with the condition.

I hope that helps.

Ezinda


#7

Thank you for replying Ezinda.

There is improvement in the guidelines that NICE give but the manufacturers will not give accurate info re statistics of affected patients in their leaflets.

Clearly many are slipping through the net ...just this week 2 have asked for help in the forum so the warnings and monitoring are not always effective.

The difficulty is in educating people about the deviousness and secrecy that give those affected the extra high and determination to carry on with the thrill-seeking whilst closing their minds to the eventual consequences.

The involvement of neuropsychologists is a promising sign....they pick up the pieces for the worst victims ...funding permitted.

I continue to support a few families who have never really recovered from the devastation but fear that many more people will face the destruction caused by these drugs.

Yes, some patients do benefit....Russian roulette is fun, as long as you're not the one that gets the bullet. 


#8

I agree with pretty much everything that has been said here. As I've said many times on this forum and elsewhere I've been up to a high dose of DAs. I've experienced the undoubted movement benefits that they offer and I agree they should not be withdrawn. Along the way I discovered that I was one of the people affected by impulse control problems. It was great fun to start with but latterly it was a bit like being a passenger in my own life. The warnings are in the leaflets and guidelines but we need PWP, their close friends and professionals to keep banging on about the risks so that people take the warning seriously and take action.

EF


#9

I too have reaped the benefits of DAs and I agree that to withdraw them completely would deny many people, particularly those like myself with early onset PD, a very useful treatment option.

Both my wife and I were warned from the start by my neurologist about possible side effects and keep a close eye out for them. But clearly many medical professionals are not doing enough on this front. As Elegant Fowl says, ongoing awareness is very important.


#10

Hi Goldengirl and others,
As explained by myself many times,although there is a link to compulsive behaviour with DA’S,so there is to Levadopa based meds.
I personally know a guy locally that was diagnosed 6 months ahead of me.He was put on Sinemet from the outset. Me,i was put on Mirapexin(DA).He was addicted to gambling,especially fruit machines.We met at the bookies.
I had my moments,i admit,but i had gambled almost every day since the age of 20.I still make a profit,that’s me.I will always gamble.The guy i know has run up debts,is out of control and now has bad dyskinesias.That’s on sinemet. It is sad to see,i have not seen him now for about 8 months and wonder if he is okay,such was his state when i last saw him.
I still,hold to my constant belief.Dopamine Agonists have their place in the treatment of Parkinsons disease,especially in young onset parkinsons(like myself).The other person i refer to was approx 8 years my senior on diagnosis.Yet i fair a lot better than him,with similar onset traits,only he was left hand effected to my right.
I still gamble,and have been told by Neuro’s recently that levadopa is not that much different in effect it has on impulse desire, as is Azilect(which i am also on,from diagnosis,nearly 9 years ago).
So you see,when a person grinds to a halt with parkinsons and they are given a drug,whether it be DA or sinemet.They"Grasp the Nettle",it is a relief response,which can often transcend what seems sense or nonsense to those not going through the same.
Without being blunt Goldengirl,you will never understand the internal feelings of a person living with parkinsons,unless you actually have the condition yourself.Although i do applaud you for the care and dedication you have towards your partner.
I have only skimmed the surface and it’s now late
Take care
Titan


#11

Hi Titan
I understand how you feel…you control your gambling and feel that the DAS give You relief from your Parkinson’s symptoms.
You are right that Sinemet can provoke the impulse control disorders…but the difference is in the numbers of people it affects,
Dopamine Agonists affect huge numbers of users…1 in 3 patients on a therapeutic dose and 1 in 2 of men under 50 ( Mayo Clinic 2010)
I haven’t the numbers for Sinemet to hand but it is far lower.
Last year we were contacted by a leading neuropsychiatrist who used my husband and other victims’ stories for a presentation at a conference.
He said Sinemet has been used for years with a tiny minority being affected and that DAs have created a huge problem.
At the end of the day you are free to choose but it is vital that patients have the facts…not the inaccurate ‘warnings’ given in the medication leaflets.
I am glad to hear you remain well.
Best wishes
GG


#12

An article in a neurology site…


’The prevalence of those disorders with levodopa treatment alone was 0.7%, whereas with dopamine agonists it was 13.5% '
Still a risk…and the statistics for DAs continues to rise as those who hide it are uncovered…
GG


#13

Sorry to see some newly diagnosed members asking advice on Ropinirole. Have they been given the right advice when it was prescribed? Side effects, coming off this drug???