Dopamine Dysregulation Syndrome


#1
Dopamine Dysregulation Syndrome is a side effect caused by the daily use of Miropexin
So serious are its side effects that it has led to the breakdown of marriages.
I have just found out that U have it, my marriage ended abruptly after 28 years sme 9 weeks ago
I fully intend to sue whoever is responsible for not informing me of the extreme possible side effects, therefore I am asking if anybody has gone through this and wishesto add their weight to the cause, please email me @ ************.

[This post has been edited by the community team to remove personal contact details. -Ezinda]

#2
Hi Stranger,
I tried but failed to e-mail you.
My husband suffered terribly from the effects of Requip XL and our life-savings were lost.
Our marriage and family were almost destroyed as were friendships.
I am not sure if you are referring to the obsessive/compulsive side effects of these drugs.
if so, it is impossible to sue.
We had protacted contact with Leigh Day in London who specialise in drug company problems and eventually we were told the company cannot be sued if you took the tablets after the warning first appeared in the leaflet in 2007, even though it states that "more than 1 in 1000 may suffer ," and the real figure is 1 in 3 or 4.
E-mail me if you want any more info.
You could ring the PDUK helpline as they have staff who are dedicated to helping victims of these horrendous drugs. At the very least you will be able to talk about the pain you are in and get emotional support
Take care.
GG
X

#3
Hi or should I say howdy,

So thats its name. Sounds pretty passive considering what its effects are on the sufferer and the victims of their behaviour, usually their nearest and dearest.

Catastrophic Impulsive/Obsessive Compulsive Disorder is what it is.

I can only wish you luck. I also spoke to Leigh Day, must have been after you, GG, cos I just got told "NO". After I told my tale of woe, I was told I was time barred because although I didn't know the reason, (it wasn't on the label, back in the day) my consultant did, so sad too bad.

#4
Well whatever people say to the contrary, I can and will sue. my barrister has stated that you must be made fully aware verbally of all the possible side effects, leaflets hold no weight in a court of law as there are people who through various reasons, cannot read a leaflet.
Further to this, he added that being warned that you may gamble is not in the least bit sufficient when prescribing a drug with the ability to provoke split personality

#5
Your barrister sounds like the business. When your finished with him can I have a shot. As soon as you mention big drug company, they cack themselves. Anyway good luck. Tear them a new one from me.

#6
Hello Thestranger,

My husband who has had pd for thirty years has suffered from DDS for several years but he has only been on sinemet plus, madopar and now requip xl. He had the problems before he started on requip, these problem are more likely to occur in pwp's diagnosed before 50 years of age. There was an article in the Parkison's News dated issue 26 Winter 2006/2007 I don't know if you can get a copy from National Office or even if they keep back copies, but I have a copy so if you want one I could post it to you or attach it to your email.

We were not told that there could be problems and his are not as bad as some forum members but as I am at home with him I have always kept a eye on any changes, it certainly has not been easy and has caused some arguments. He has challenging behavior now and that is one of the reasons why I can't keep him at home anymore
its the split personality which is such a shame as he is really a lovely man and I say I have my hubby and pd hubby.

On the positive side he is wonderful for the length of time he has had pd and is raising money for men@s cancer by growing a tash and beard, he has achieved many things during his pd years including running a marathon photography prizes as well prizes for his flowers and hanging baskets just some of the different things he has been able to do since giving up work.
I wish you well in your legal proceedings as this will help everyone,.
best wishes
vivian

#7
I echo Eck and wish you all the luck in the world.
I too would like to know the name of the barrister who will take on a large drug company.
GlaxoSmithKline have been fined and ordered to pay compensation of millions many times in America for the side effects of DAs but not once in the UK.
They seem to be insuperablehere from the experiences of forum members.
Do keep on posting and let us know how you get on. Stay strong!
GG
X

#8
Dear Mr Stranger....

although you will get loads of advice here from people who have been damaged by this problem , I beg you to consider carefully your actions.

I am not telling you what to do, but take your time, do not react with your heart but rather with your head. Research what has happened to other people who have tried to take this course of action and do not commit the same faults as they did.

Also, and this is difficult to take on board, make sure you know that you are thinking clearly. What , exactly , do you want from this action. Money , a public apology , the total destruction of the company that makes Mirapexin, what?

Best wishes and good luck

C


(I have to declare an interest. I have had Dopamine Agonists with no significant effect either good nor bad. I am a mainstream medical supporter and have an interest in statistics and science. I was a fully qualified Biomedical Scientist when I worked before I got PD)

#9
I am an attorney in Canada and I would be very surprised if you couldn't get compensation because of a pamphet from 2007. However, unless you are wealthy and don't mind spending years in Court, going up against a big drug company would be very frustrating and expensive.

Current methods of warning of side effects are clearly not working very well.I think the warnings of possible side effects that are found on the drug information sheet that accompanies the drugs should be printed in bold ink and surrounded by a black box so they cannot be missed. That would help PWP avoid the problems and pitfalls.

I was diagnosed about 2 years ago and take a daily regime of amantadine and mirapex and have never suffered any side effects except for the occasional momentary hallucination (really just eye disturbances in the form of people off to the side that last for a nano second). I am one of the lucky ones.

I keep a blog about my journey with PD. It is found at www.wpgchap.blogspot.com I hope I haven't violated any rules by mentioning that URL. If I have, I apolgize. If you visit, start at the beginning last year. I am being upbeat about my conditon and have tried to be informative with a touch of humor in my blog. I would like to thank the "old pros", the long-time sufferers in this forum.

They give me hope the condition (I hate "disease") will be slow in its progression and that in 7 - 10 years I will still be living a full and active life.

Writing about PD can be very cathartic

#10
It thought that someone was taking a class action against a drugs company. allegedly.

Did the Canada win, or was it all settled out of court, like britains, allegedly.

#11
Hi I have tried to get advice regarding this issue for years now and feel browbeaten now. Like others I have we were left penniless and I will loose my home in the next few months as I continue to pay whatever I can back to the debtors. All because I was prescribed Requip/Ropinerole and never advised about the possible consequences. I have been dx for 12 years now and when I suffered OCD behaviors it was not even written in the small print within the drug packaging. By the time I found out that the drug was the cause I was then told 'too late, you must take out an action within 3 years', just how the hell could I when it wasn't generally known then?

Like many others I would dearly love to join forces with others who are prepared to take some action but it would appear that for some of us that have had PD for a long time the law is firmly against us being able to.

Glenchass

#12
Dear Glenchass,

Reading what happened to you makes me feel very lucky as my husband had some of the problems but I was fortunate to be at home all the time with him and when the phone company rang to say our bill was very high all of a sudden I of course checked it out. It was my husband phoning competions through the night, he did win £500 but I had to put a block on it. The only way I could do that was to request and pay for parental control through the tv/phone company.
I hope you do get some help, have you tried your MP.
On another matter I had a spinal injection just before my back op and people brought a case against Glaxo as it was proved the die used caused nerve damage,as my husband had just had to give up work we didn't join the group and I was glad after as they only just covered their costs so it was a lot of stress we didn't need at the time.
Someone must be able to help you it is so wrong for people to end up with problems like yours.
Love and best wishes
vivian

#13
Anyway it should be called Catastrophic Dopamine Dysregulation Syndrome or FCDDS for as its acronym. No its not a typo.

#14
The whole question of getting the drug companies to compensate victims of DA induced OCDs rears its head regularly on this forum but usually peters out as no-one has any success to report and all have been palmed off by legal firms with a variety of explanations for not being able to pursue a case against these massive companies.
I asked a long time ago for PDUK to get a legal firm like Leigh Day to post on here stating what the problems are and what is needed to launch a class action in this country.
I would also like an up-to-date picture from Blue-eyes who took up a role in the OCD/DA group in PDUK and promised that he would be tackling these issues as a matter of urgency.
I do hope the moderator can pass on yet again these requests and give some guidelines as to how we can move forward rather than endlessly circling around these devastating issues.
We need your help and support in a concrete way not just noises assuring us that you are considering how to help.
GG

#15
Hi goldengirl,
I've passed your message to Suma and am waiting for a response from her.

Thanks,

Ezinda

#16
Thanks Ezinda.
And news from Blue-eyes?
I look forward to seeing an up-to-date picture of how things are progressing.
GG

#17
Hi,
You will find very little.No news is good news.Everybody parcelled up in their nice little medication controlled and subdued package,s.People spout this and that.Only US,those that know the whole scenario,see the whole picture for what it really is ,understand.
It is laughable.It really is.Anybody stepping forward to say it like it really is,is alienated.The truth is out there.Not the truth you spout though Goldengirl.You are an outsider looking in,a searcher of lost causes.A puppet for the MASTERS.One day you may understand,and it ain,t all PD either.
Titan

#18
Hi all,
I have followed the forum for some time but not had the confidence to post before. I'm not sure why I am doing now as I see no way to resolve our situation. My OH was dx about 8 years ago and after about a year was put on Requip. His dose built up over the years and so started his "secret life." Two years ago I started to spot certain signs that something wasn't right and he confessed to cross-dressing. To cut a long story short this was the least of what he had been doing and now our marriage is just about on the rocks. I found out that his dose of requip had reached 24 mg, way above the recommended dose. I have had very little support from the "professionals" as my OH had no intention of reducing his dose - he likes the way he is and can't see a problem. It is only now that I've said I can't carry on that he has started reducing his dose with the neuro's support. I feel angry and powerless. Thank you for letting me offload.

#19
Dear Annie,
I am so sorry you have had to endure all this on your own, I know another women who has had years of the same with no support from the professionals. I makes my blood boil that in some cases the professional don't listen to the spouses as I feel that if they did it would help if they don't then they should be responsible for the turmoil these drugs cause.
The problem with some pwp's because of the drugs and pd is that they can't see a problem (like your husband) therefore there needs to be a tighter check by the doctors, so much of the heartache caused by these drugs could have been prevented or minimised if pwp's were checked every three months, six months or yearly appointments are not good enough because of the variety of reactions to drugs and the condition it's self.
Your husband should have his drugs reduced gradually and a replacement started as soon as possible or a lower dose of requip, I do hope you can get some help soon.
You could also ask to see a as you will see on the forum some others have had very good help this way and it has saved some marriages
best wishes
vivian

#20
Hi Vivian,
Thank you so much for your support. My OH is reducing his requip gradually and is now down to 16mg without any negative effect on his mobility etc. but it also doesn't seem to have had much effect on reducing his impulses either. I live in fear of him being arrested or coming to harm through making himself vulnerable. I have asked the Parkinson's nurse if we could be referred to a neuro psychologist (as suggested on other threads) but she didn't think it was appropriate and said that anyway only my G.P. could refer us. Our G.P. didn't think it was appropriate to refer us either, so that was the end of that.
There seems to be nowhere else to go and although I can't really blame my OH for the effect the medication has on him, his resulting behaviour is impossible to forgive at the moment. Thank god this doesn't affect everyone who takes D/A's.