My guess is they will be dropped sooner or later because of the stats. But no, all that is needed is for a neuro prescribing them to say very clearly to the patient and carer: Please inform me if you notice any changes in behaviour. It's that bloody simple, but I bet none of them do it.

Luckily,John's original neurologist spelled it out and gave an example, which to my shame I laughed at because I could never imagine my husband doing similar.To his credit the neurologist gave me a verbal slap on the wrist saying,"This is very serious."

Hi ray of sunshine,and all,
Ray i can only assume my answer to your hypothetical question makes perfect sense.Looking through the postings of late,what i and others have been saying from the start seem to be coming to the fore.I do feel great sympathy for all those who have suffered in the past.However its the future which is now important,especially for those on,just embarking on,or thinking about starting medication.Some stand out points for me being.
1. Awareness of potential problems,discussed between PWP,Neurologist,carers and others involved in care.(box ticked in my case)
2. Correct information concerning side effects,correct administration,dosage,especially in regards leaflets with medication.(my mirapexin leaflet is totally informative and precise)
3.Education and discussion.Absorbing all information on this site for example gives a greater knowledge and awareness to help avoid the mistakes in the past.Members on here have contributed on this thread having changed meds on recognising problems developing,this shows it is possible with the awareness now gained
4.Intervention by carers if problems occur being taken as significant by Neurologists,their rights as carers are important as ther lives are also turned upside down.In the last couple of posts,such a case has been highlighted and intervention worked.
5.Most medication causes side effects,it's whether the positives outway the negatives.As also mentioned on this thread,even Aspirin is not agreeable to some.If you are aware or become aware don't take,or stop taking it.
6.The fact is that the positive aspect of taking Dopamine Agonists for the majority is clear.If everyone is sensible and alert on all sides then with everything taken into account things will only get better and the minority with problems will continue to decrease.
All the best
Titan

ECD, you ask "so do i want DA's banned when they bEnefit the vast majority of PWP?"

In the case of Pergolide and Cabergoline my answer would be 100% YES. If they have already been banned in the USA, its for a very good reason. Remember the FDA would not even grant a licence for Cabergoline to be used in the treatment of PD, and Pergolide was withdrawn by the Drug company itself. In both cases it was because of the potential serious side effects they can cause regardless of the percentage of people effected. In respect of other makes of DA'S, i am not saying they should be banned, however there must be some sort of consistantancy or best practice implemented between drug companies and health officials in the way these drugs are administered to PD patients.

Some patients were most annoyed being taken off Pergolide as that drug worked so much better for them and they had been on it for years. Some were kept on it, but had regular check-ups of their heart valves. Giving check-ups and monitoring patients is the usual routine when serious side effects of a drug are known. Look at the list of side effects of corticosteroids. As long as the beneficial effects outweigh the nastier side effects and especially if there are few alternatives who is going to deny the patient these drugs.

DOTTY:

When I was first diagnosed with PD the Neuro immediately prescribed Cabergoline. The 0.5mg tabs were supplied as Dostinex; 1mg, 2mg and 4mg came as Cabaser.

Your statement that “Cabergoline has for many years been used globally for the treatment of hyperprolactinaemic disorders” is of interest to me because the very first obsession to hit me, and which stayed with me throughout the many years I was on DAs (but ceased the moment I stopped taking them), was secretive cross dressing. This was accompanied by extremely hyper sensitive and hyper erogenous nipp1es, and – over several years – a slight (but quite noticeable to me) enlargement of the breasts. Not good for a bloke!

There was no effect on my sexuality, though, and despite the above changes I remained 100% heterosexual in my desires. As the “normal” DA obsession of hypersexuality then set in, with assorted new fetishes, my need for sexual satisfaction many, many times a day more or less took over my life. It was some time later that these OCDs were joined by the hyper spending, the massive uncontrolled gambling and the insidious breakdown of normal reason and comprehension of reality.

ECD:

Of course withdrawing all DAs would not help the majority who are doing very well. It’s a matter of degree. If it were the case that 1 in 7 DA takers would die immediately, while the lives of the other 6 would improve dramatically, the drug would nonetheless be withdrawn straight away – quite rightly.

On the other hand if the 1 in 7 were only to develop an itchy nose, the authorities would close the file straight away – again quite rightly.

So the real issue is “How seriously bad could the DA side effects be?” At what point – if any – does the unwanted and horrific new life of the one override the improvements for the six? And no-one is qualified to make such a judgment unless they’ve experienced the worst. What I CAN say is that while I was under the “DA spell” I was twice prevented by the police from committing suicide (once at Beachy Head, once at the Humber Bridge), and “Hell” is far too light a term to describe what I went through.

TITAN:

Yes, awareness is key, but this depends on Neurologists actually making newly diagnosed PD patients aware. Most of the former are excellent, but – as with all professions – there ARE still some bad apples who give no warnings, and this STILL results in newcomers entering the DA world clueless as to potential risks. And don’t forget that not every patient HAS a carer – many live alone.

I’m sorry, but the comparison with aspirin is silly. 1 in 7 aspirin takers do not suffer from mind-twisting, life-wrecking, personality-changing, catastrophic chaos. And your statement that “if you are aware, or become aware, don’t take, or stop taking, it” shows a complete failure to understand the very basic points for the seriously DA-affected, which is the loss of free will, failure to comprehend even the normal world let alone the weird world of DAs, and ultimately the inability to tell right from wrong. (And please don’t anyone do me the disservice of telling me I’m exaggerating). Once you’re in there you cannot just “stop taking it”.

Hi Ray

It’s evident that you (and others) have had an absolutely, unbelievably rotten experience of DAs, and I’m not surprised that you are all very angry that they are still being prescribed. However, there is one question that I would really like an answer to:

At the height of your nightmare side-effects (and I believe every word you say), what dose per day was being prescribed for you? I can only relate to Mirapexin although other people will be able to relate to other DAs. I am taking the ‘maintenance dose’ of 1.05 mg after five months. For the record, the maximum recommended daily dose of Mirapexin, as stated on the leaflet which accompanies every pack, is now 3.3 mg but I understand that this was somewhat higher a few years ago.

Like Titan, I was made fully aware of the possible side-effects by my neurologist, who also stressed the need to titrate the dose slowly. However, it goes without saying that, in the light of current knowledge, ALL neurologists should be educated to do the same.

I hope your current medication is working well for you.

Best wishes

Lily

Hi all

I know I'm making a nuisance of myself, which wasn't my intention, but there is one more thing I would like to add, if everyone will bare with me just one last time.

Someone said to me privately that they are full of admiration that I have not given up on my friend, and it occured to me that there is something I have not made you all aware of. I have actually tried to get this man to leave me alone - I got to the stage a long time ago where I just wanted him out of my life, not because I didn't love him anymore, but because I couldn't take it anymore,and I accepted there was nothing more I could do, and I have on numerous ocassions begged him to stop contacting me but he will not. He promises he will, and doesn't contact me for a week, but then is back again, and has admitted himself he doesn't know why he keeps contacting me. I have changed my mobile number, which I had for 10 years and had to go round schools etc giving them my new number - but he still has my house number (which I cannot change), and is on my computer when I log on. My email address is my name and I do not want to change it. I did delete him from my contacts thinking that would work, but it didn't. I am afraid to answer my phone and afraid to log onto my computer for fear that he will be there. He has found me on other sites and contacted me through these and I am now paranoid when people contact me incase it is him. I have thought of going to the guards to see if they can do anything on grounds of stalking, although I'm not sure how this would work as he's not doing it in person, but as he is an x guard himself I doubt they will take it very far, especially as when they stand in front of him he will just tell them it is me that is mad, how he has tried to tell me it's over but I won't leave him alone, which is not true. This actually started on the 7th November 2009, but for the first few months I didn't realise the seriousness of the situation, how I wish I could go back in time!! I presumed it would sort itself out and everything would be ok within a short time, but it didn't so all in all I have been living like this for 9 months and can see to end to it at this moment.

I am a normal person, I am a single parent with two children, I work to support myself and my children, I moved here 9 years ago to look after my mum after my dad died unexpectedly, I also have emphysema and need to look after myself and now have this on top of everything else. I should be looking after myself but no longer sleep properly or eat properly. I am suspicious of men that speak to me now because although they may seem normal, even maybe nice, I know how they can end up, and I can honestly say at this point I cannot see myself ever trusting anyone again, that is of course if I ever get this man to leave me alone, which at this point I cannot see happening as I think I mentioned earlier that he has left home and I cannot find him, and even if I do find him I can't get his medication changed unless I can get him to the hospital, and he won't go because as he continually tells me I am the one that needs help not him!! Even today he told me I need to go to see my doctor - and then in the next breath he asked me to send him an email telling him why we should be 1.

I am not looking for sympathy, I just want people to understand that if this can happen to me and him it can happen to anyone, neither of us has done anything to end up in this situation, as I mentioned before we were well aware of the side effects of the medication and monitored, but it is bigger than the both of us. This is a man that loved me, that I looked forward to spending the rest of my life with, and I would not wish anyone to end up as we have.

As I have said previously there was a point I actually thought I was mad or at least suffering from some mental health problem, and it was only through reading 'relationship in turmoil' that I realised that others were experiencing, if not the same then cetainly similar things to what I was, which has helped me enormously, and I would like to thank the people on this site who have given me advice, which they sadly had to gain through their own experiences, but who have also helped more than they will ever know.

Amy

Sorry, the maximum recommended daily dose of the prolonged release version of Mirapexin, as stated on the leaflet, is 3.15 mg not 3.30 mg.

Hi Amy.

I think that "outsiders" - with or without experience of PD - will never be able to comprehend the power or complexities of these DA side effects. They don't have a clue, they really don't. Not their fault, though. I'm sure you and I wouldn't believe it if we hadn't experienced it first hand for ourselves.

But unfortunately there are hundreds like us out there who HAVE been through it all, and who DO understand. Email me if you'd like to make any more contacts.

Ray x