Hi Lily.

I merely presented a hypothetical case and posed some questions. I didn't provide answers of my own, I just asked for opinions from every viewpoint.

a) Is the figure of 1 in 7 based on the current year or on the entire period DAs have been available?

It's based on the whole period from when the link between DAs and OCDs was publicly confirmed (in 2002) until the present. (There was a BBC TV programme about it - which can be seen on the net - on 11 Aug 2003.) 1 in 7 is now the standard figure scientists quote in the UK law courts.

b) How many of those people have suffered only mild side-effects rather than the full-blown, utterly devastating, effects that you and others have described?

That's a good question, but this proportion has never been provided. All we DO know is that HUNDREDS of victims are sueing for totally destroyed lives, and that on top of the 1 in 7 there are many many more "in hiding", who won't come forward, for various reasons.

c) How many of your hypothetical 102,857 people have received over-subscriptions of the drug, bearing in mind that it is only relatively recently that the connection between compulsive behaviour and DAs has been made?

Obviously I don't know how many over-prescriptions, if any, there have been. What I am surprised by, though, is your suggestion that an 8-year period of monitoring can be considered "relatively recently".

Ray.

Dotty:

No wonder Cabergoline is being withdrawn because it causes heart problems!

Ray.

Hi Titan

I'm no expert either, even less than yourself as I am not the one with parkinsons and can only comment as my experience as an observer looking on. It definitely is parkinsons, I know the type but can't remember the name at this moment (I have a head like a sieve these days - to be honest I am so upset all the time I have tears behind my eyes permanently and it's hard to concentrate on anything ::cry::]) I did wonder about his medication myself,as he often forgot to take it - he's continually on the road and might take the morning tablets but not the mid day - or the evening one, sometimes not taking any, and to be honest I didn't notice his parkinsons any worse, but his head was alot clearer, he was nicer, more relaxed, enjoyed himself more. In fact in my honest opinion (but noone would listen to me if I said this), I think the drugs make his parkinsons worse as they stress him out and it's the stress that causes his arm to shake, but obviously I cannot prove this (about him being better without them I mean). At the beginning when I noticed the differences in him I put it down to mood swings caused by the parkinsons/ medication, as it never occured to me that he wasn't taking all his medication, it was only after he told me that he often forgot to take it that I thought back and put two and two together if you know what I mean - although obviously this is not very scientific (but I am a woman and we do know everything ) With regard to the drugs he's taking, I live in Ireland and he pays privately for everything and he went to some top parkinsons specialist when he was first diagnosed who put him on THE BEST MEDICATION AVAIILABLE (probably also the dearest), so he won't change as he is on the best medication there is, and is so scared of having parkinsons that he will do anything they tell him. I looked up his medication on the net once and it said it only lasts about 4 years as the body gets used to it, and is usually saved for later on, so what will they put him on next, the worse - when he will need the best (he's only 49 he has a long way to go with this) but he won't listen to me. (The current problems started when they changed him to a 1 a day slow release version of the 3 he was perviously taking, as he is now constantly on the full dose which he wasn't previously as he never remembered to take it!!)

When I first met him and he told me he had parkinsons I was prepared for the physical aspect but had no idea that anything like this existed or could exist, and nothing could have prepared me for any of this.

Any

My life at this moment:

X rang me last night : how am I, how’s my family, have I sorted out accommodation for my daughter going to Uni yet? His girls are fine, they’re doing this and that etc. he is good, he’s very busy with work how is my work going, has it picked up at all etc etc etc, I’m not going into personal details of the conversation, but you get the gist, a nice normal conversation … , everything is happy.

I ask him to meet me for coffee tomorrow, NO. why? Because he doesn’t want to, why? because he’s never going to see me again, why because he doesn't want to. So why is he ringing me, because he wants to stay friends, ok then meet me for coffee a friends, no, not only will he never see me again but tells me I will never find him.

And this is how I have lived for the last 6 months. Sometimes he cries to me on the phone that he knows the medication is effecting him, sometimes he just tells me that he loves me and misses me, sometimes he calls me the biggest **** he ever rode and tells me how much better his new girlfriend is than me, sometimes he just shouts a me and hangs up. But he still keeps ringing me.

I have not meant to upset anyone by anything I have said on this site, I joined to look for help as I do not know what to do anymore. I want things to go back to how they were before he started this medication; I want to go to the pub, have a laugh with friends, play pool, go home to bed, sleep in his arms, wake up and share breakfast with him before we both go to work – which is exactly what I did the night before he started this medication – that's all I want.

For the people that this medication works for – I am really happy for you – but for the others like X, not only is his life being destroyed but mine as well.

Amy

If a drug has severe side effects (who decides the level of severity?NICE?) for some people (who decides the number of affected people that will trigger the withdrawal?NICE?) it can of course be withdrawn as has happened to some drugs, among these there have been drugs, that had been on the market for several years. It usually needs life threatening side effects before this drastic action is taken. Even very severe side effects for one patient, but not another does not necessarily warrant withdrawal(take Thalidomide). For lesser side effects warnings (I think Cabergoline and Pergolide are not yet withdrawn in this country, but have warnings attached and instructions for regularly checking for/monitoring heart valve abnormalities) should suffice if only they were read/known....Does every GP pick up his BF and read up on the latest medication that he/she has not personally prescribed like it happens in the case of PD? I think there should be better monitoring and here there is certainly room for improvement. The neurologist prescribes(letter to GP), but the GP does the day to day monitoring and is the first port of call in case any problems arise. But the GP is not an expert in PD or its treatment. So they should be better informed/instructed by the consultant neurologist and warned in the case of DAs.

Dear Amy,
I am absolutely stunned at what you have to deal with. In my husband's case, there was mercifully no OCD, but the breakdown of rational thought was there and was extremely scary. You said some posts ago that it's not enough for the PWP to ask someone to look out for personality changes, the right of this person to raise the issue with prescribing doctors must also be sorted out by the PWP before starting on DAs. That is such a good idea and could save others a lot of anguish.
Have you read the thread "Cross roads with relationship in turmoil" in the section for carers, family and friends? One or two of the posters there have been in similar situations to yours, and I wonder if it would help you to try and start a private conversation by PM?
All the best,
Marie

Hi Mariel

I have read the thread relationship in turmoil, and have been in touch with women in the same position as myself, I have made one very good friend on there. To be honest until I read what other people were saying I actually thought I was going mad, or that he was some sort of mad man with a private vendetta against me that I knew nothing about, (remember I have only known him 2 years, not like so many of you that have been with your partners for years - and I only met him after he was diagnosed so I don't know what he was like before) and it was nice to hear that other people were experiencing the exact same things as myself, and has helped me alot. It was while reading that that I saw this thread, and I just wanted to warn people that sometimes it's not as easy to sort out the problems as they think it is, as I have found to my cost.

Thanks Meriel

Amy

"N.I.C.E. are somewhat lacking in there responsibility of "Due Care" towards UK Patients. Its already been proven in the USA some years ago that both Pergolide and Cabergoline should not be used in the treatment of PD. Pergolide was withdrawn about 2 years ago and the manufactures of Cabergoline were never allowed a licence to sell Cabergoline in the USA to treat PD. They were refused a licence by the FDA (food and drugs administration) several years ago to sell Cabergoline, under the brand name of Dostinex in USA. This was because the potential side effects were considered too dangerous. Cabergoline has for many years been used Globally for the treatment of Hyperprolactinemic disorders. However this is at much lower dosage level of 0.5mg to 1mg a day. The FDA found that trials in the USA showed when Dostinex was administered to PD patients at much higher levels of up to 6mg a day, it can lead to major side effects. These include heart valve problems, behavioural and other mental health issues. So the FDA refused the drug company a licence to sell Dosintex for the treatment of PD in the USA. However here in the UK, N.I.C.E. ignored all the evidence and approved the licence for the makers of Cabergoline to sell there poison under the brand name of Casaber. Even now in 2010 with all this damming evidence there are still medical professionals here in the UK prescribing Cabergoline (cabaser) to new as well as existing patients at dosage levels as high as 8mg a day. So until ALL our Medical profession come on board in to the real world, i feel we owe it to current and future PD sufferers to keep banging on about this issue.

I usually stick to the 'relationship in turmoil' thread as it has been the most relevant to me, but I just want to make one comment about the carer-neurologist relationship. I googled my husband's neurologist, found his email address and emailed him about very distressing things going on in our lives - i.e. our marriage was destroyed to the point we had separated, with my husband's sexual behaviour completely different, personality changes (in very subtle ways, but that's why it's so confusing), and the fact that he had started an affair by phone and email with an old flame in another country (thank God it wasn't in this country, or those papers waiting at the solicitor's office really WOULD have gone to the court by now).
Anyway, the neurologist emailed back straight away and said perhaps it was time to take my husband off Mirapexin.
Next appointment he talked it through with us and that's what has happened, and although we still live apart, I can only explain the difference in my husband as being the absence of Mirapexin, because I can really relate to him again and we see each other often, my husband ending the affair about a month after the Mirapexin was withdrawn.
I haven't had the gambling to deal with, but have had the porn. That's all history now. So in a lot of ways my story isn't as bad as others.
However I think there is no question that the partner has the right to approach a neurologist directly when the marriage is put into jeopardy. In our case the neurologist knew what to do and it worked. He was very sympathetic to our plight. Medical people should have a holistic approach - they are not just there to treat shakes and slowness.
Apologies to neurologists if this post causes them to be bombarded with emails!

Do you want all D.As banned?It sounds like it.This would not help the vast majority of PwP who are doing very well on them.