Dopamine Agonists and catastrophic Obsessive/Compulsive Disorders


#501
hi Annebernadette

Coming straight off DA's may well stop the OCD behaviour however it can potentially cause other issues as with any powerful mind altering drugs. On this occasion i tend to agree with your neuro reducing the dosage gradually rather than an immediate withdrawal.

I'm not sure if there is a cost difference between the 2 types of DA drugs. I do know however different neuro's seem to lean towards one DA brand as their prefered option? Maybe this is based on their experience of benefit vs side effects or if i was less charitable i could say based on the drug company Rep's selling skills?

all the best
bluey

#502
Hi AB

there is sometimes a problem with DA withdrawal symptoms (DAWS), just google 'DA withdrawal symptoms'

http://www.medscape.com/viewarticle/715173

#503
Hi Annbernadette
My husband came off DAs very slowly under medical supervision reducing the dose slightly for a week then another reduction etc. He was on 36 mg a day of Requip XL. It was awful with side effects such as depression , anxiety, insomnia... it takes 8 to 12 weeks to leave your system after the last dose.
The behaviour gradually returned to normal over the following year and now we have the terrible guilt and remorse to deal with as he surveys our wrecked relationship and financial loss.
It is worth it all to have my kind husband back instead of the cruel lunatic of the last few years and we are starting to rebuild our lives.
In the end we had to say to the neurologist "no more DAs" and dig our heels in. We changed neurologist and life began to get better.
Persist and good luck!
Love Goldengirl

#504
Hi AB, I was taken straight off the Da's and believe me you dont want to go there, it was bloody awful, oops said bloody...will I get suspended? I suggest that you take your neuro's advice and reduce gradually. Good luck in stopping the shopping....anyone want to buy 13 yes 13 light fittings...all the same still in boxes and wrappings? This was just one of my many many purchases whilst on the DA's and Ive got plenty more goodies in the loft n garage...you gotta laugh though!!!

All the best AB

Glenchass

#505
I was diagnosed 2003
Put on DA 2005-2006
Ripped off all meds for 2 weeks
Levadopa 2006 onwards

Being ripped off DA's was very unpleasant, had to be hand fed at times.

When got on levadopa, it was brilliant.

5 years on, its taking 0.5 - 1 hr for tabs to kick in, wearing off 1-2 hrs before next dose due. Still happier on Levadopa than I was on DA's.

I can't say if my OCD behaviour stopped straight away, cos I couldn't move.

But the OCD has disappeared.
Now neuro `won't give me apomorphine and suggested I opt for brain surgery in a couple of years.

Should I insist on apomorphine or will I turn into a freaking idiot, given it only lasts an hour and all the money / credit cards have gone.

#506
many thanks bluey,krugen, goldengirl,glenchass & Eck

Dear Eck, I have also been told DBS is my next option & it frightens me. I also recognise the need to be fed, & the reluctance of o/h to do so
C'est la vie (see I still have some brain power remaining!)

#507
Hi,
Think ROS,should not be punished for last discretion,but there is a constant feeling of antagonism in his posts.He always insists on being right,having the last word and the insults generally come thick and fast.I have received some of his most cutting remarks,being called a seaside Clown,put a smile on my face though,which took some doing the way ive been lately.As long as the posts are not nasty and threatening,i think we should all be treated as adults.
DA,s definitely have there place,and to me,the alternative Levodopa is much worse,every posting i read,has worsening,more rapidly progressing symptoms,within a relatively short length of time.
p d Should mean Parkinsons detonation
Because the medication merry go round
IS like shuffling through a minefield
All the best
Titan

#508
My DA episode 5 years ago this month.

Today I'm off to the citizens advice to try and stop a credit card company from repo'ing my house. This American based company seems to think me the next bin laden and is holding me responsible for it's national debt.

Despite repeated attempts to explain my situation, asking for a cessation of interest and my having paid them thousands, this debt has gone from £10k to £30k. Reminds me of the way america treated the UK during and after WWII.

Anyone know what its like to live a frill-less existance, with every spare coin grasped to pay debts caused by prescribed drugs.

And the expletives still aren't finished.

I wonder who lobbied the government to withdraw legal aid for medical negligence claims? http://www.bbc.co.uk/news/uk-11741289

#509
I fully endorse your sentiments ECK.

What you are describing is the bit people who are not impacted by this issue least understand. Sure Doctors and pharmaceutical companies tell us, cut down or stop taking DA's and OCD side effects will cease. That may well be the case, however people affected by pathological gambling or compulsive shopping are left with years of stress caused by debts. Making things worse, there is little or no empathy from creditors, the legal system and courts or from those who caused you the problem in the first place.

Before i started taking Cabergoline i had NO debts, owned my home and had around £45,000 in savings. By the time i came off Cabergoline i had £300,000 debts, NO home and NO savings. I even had to use my DLA money to pay for my bankruptcy costs.

I wish you all the best ECK at today's CAB meeting and hope you can sort things out.

regards
bluey

#510
Hi Eck
You could try phoning Leigh Day in London.
The class action only includes those who have gambled but they were very polite and kind to me and sent me the questionnaire they send to those who might be eligible to join.
My husband never gambled but gave £30,000 to a young Malasian con woman for the promise of sex and became obsessed by all things sexual.
You might find support from them depending on how you lost your money.
Is no-one helping those affected in ways other than gambling? Could PDUK pffer advice?
x

#511
I may be speaking out of turn here .... but I feel there is nothing written anywhere to offer help to the victims of these drugs. It seems to me that the lack of support to PWP when the poo hits the fan is like a slap in the face or a kick in the groin.

Ok, I now know that not all PWP get into such deep trouble on DA's but for the ones who do and are left to face the added worries of how to solve their problems on their own without anyone to advise them is a poor show.

I in my ignorance, thought there might be a body of legal people who know what might happen to someone would be there to assist and help the victims (because that is what they are victims.)

I have read the hardships those folk have to go through, and surely the added stress of it all must not be good for their condition. My own brother included in the ones that have been affected in many ways because of DA's.

I myself have had good solid advise from members who have also suffered and are still suffering. Good, kind people who have taken time out to point me in the right way to seek help and advise. Not from any medical or legal suits but from their own experiences, for that I thank you all, no need to name them these good kind people know who there are.

My point being, all people should have this advise and help from professional people, who know the meds inside out should in my opinion use their knowledge to help.

Sorry for waffling on. This is just how I feel about it all.

ECK, good luck today, I wish you well and hope you get somewhere with CA.

Radz x

#512
Hi Eck and Radz I'm in agreement with both of you. I, like you am left in massive debt, I'm just managing to hang onto my house, but I know that will go very soon and God only knows what will happen then. Nobody seems to care, it isn't just the devastation caused whilst on the DA's its also the aftermath, which lasts for years, I think mine will probably still be hanging around my neck till the day I die. Like Radz, I too pay what I can toward the debts from my DLA, I have been paying them back for 4 years but the debts don't get any smaller. One bank took a charging order on my home which means when I sell it they want their £10,000 straight away. I don't know where to turn with it all, I've been to the CAB but got nowhere and yes the stress does take it's toll on my health as i am sure it has on others. I cannot see any light at the end of all of this, so yes the DA's have won despite me being off them now.

Those disbelievers/skeptics before you judge come, stay at my home for a month, open my mail, answer my telephone and juggle my government pension and DLA,if that don't change your mind nothing will. Before DA's I had a well paid responsible job, no debts, long haul holidays and savings. Now I live like a pauper and sometimes think it might be better if they jailed me for the outstanding debts. My poor husband suffers along with me, he did nothing except support me throughout, neither of us had any idea that the meds were affecting me because it was before they started to put the warnings on the leaflets an my neuro never even eluded that there was an outside chance that anything like this could happen. Surely somebody should at least help us..I don't want lots of compensation, I simply want to be debt free again and know that I wont have my home repossessed. Does that sound so unreasonable?

Glenchass

#513
I agree with everything you have said Radz and feel that we should all pull together and strive for a body that would fight on our behalf.

I haven't been affected (as yet) with da's but really feel for the people and families who have lost everything. Sure they got the sympathy vote and confirmation about what these drugs do but then - nothing! Surely they are entitled to compensation and counselling to overcome the mental side of things.

I have just started on meds--Requip 4mgs and that will increase but its thanks to the PWP on this forum who posted their experiences that me and my family will be aware of any changes in my behaviour and habits.

that's my rant over for today!

#514
Hi Glenchass
I posted before reading your post and I feel more strongly than ever that you and others like you need support asap. Is it something that Parkinsons UK would or should take on? Do they have a legal team that can advise - what do others think?

#515
RENEE, I think you are 100% right, it seems to me that people are left to their own devises......and that is so wrong. There should be a HELPLINE for these poor souls left in torment. Surely by now PDUK should help and advise PWP going through this NIGHTMARE but sadly no.

I often when I sign in look to the bottom of the page to see who are on line, I wonder what the 100 odd guests must be thinking. I lay a pound to a penny many of the GUESTS are reading in looking for help and advise. I think to myself, I bet some of them are perhaps PWP or their O/h or carers are reading in because they themselves are going through the mill and just don't know where to turn for help....there is no where on this forum that offers help and advise. I admit the Helpline number at the top of our forum offer help re meds etc but nothing to those affected by OCD'S due to DA's.

I wish I had done Medical Law instead of Aviation Law because believe me had I, I would be fighting for all those people who's lives are shattered and can see no way out.

Radz x

#516
Hi Everybody
A few of my thoughts
When I first found out the cause of my behaviour, Ilooked on the Internet and found the Love & Casino wars/Dopamine Agonist Help Centre website in early 2006. Among the stories of disaster in the USA mainly due to Mirapex and Pergolide (Permax) , there was a entry from a guy who claimed to have been involved with the administration of the clinical trials of Mirapex, who said that they had deliberately contrived the questioning to avoid the behaviour issue, as they were 'expecting trouble' (my words)

Well you might say are we supposed to take him at his word.

But lo and behold when we read the Statement of Claim for the Class action on the well known Canadian attourneys website, we find exactly that. Several of the subjects were in "financial ruin" and others had a libido "out of control" and come 2003 'in the field' when reports were coming in from patients, and one woman who was bankrupt and hospitalised as she was suicidal, it was reported to the drugs administrators that she was "Anxious"

Common sense tells you that when the likelehood of a side effect is 1 in 4/3-?-2+ , how could this not be detected in a proper clinical trial?

Incidently, the Canadian lawyers didn't mess around, they placed adverts and a form in Canadian Newspapers to be filled in by the patients and signed by their Doctors. Anybody see that happening here? That is one of the biggest problems, there is no 'rallying point' United we stand divided etc.

My experience of trying to sue my consultant reminds me of the story:-

Winston Churchill was showing a new Consevative MP around the House of Commons and they were sitting on the Conservative front bench.
"That's the enemy" said the young MP, pointing at the Labour side, "No!" said Winston "that's the opposition, the enemy is behind you"

Jonathan

#517
Your remarks are useful and perceptive Jonathon.
Could I ask PDUK to reply asap on this thread?
Are PDUK willing to aquire legal advice, kickstart a class action,advertise for patients to come forward, create a helpline?
We need your help.

#518
I totally agree with you both.....


It seems to me the NHS stumps up more often than the drug companies, so it might be better 2 sue them, or the consultant. the consultant would have the additional risk of being struck off, + the publicity. Remember thalidomide? on the market from 1957, UK compensation agreed 2009. Took 52 years.

Let us hope it wont take that long today to get answers and HELP, & ADVISE.


Radz xx

#519
If you type " legal action against GlaxoSmithKline re dopamine agonists" into a google box you get pages and pages re law suits.
None are in the UK.
sample:
http://www.cphionline.com/news/13766/GSK+Faces+Legal+Action+Over+Parkinson's+Drug.htmle

#520
http://www.cphi-online.com/news/13766/GSK+Faces+Legal+Action+Over+Parkinson's+Drug.html

Sorry..think this is right!