Dopamine Agonists and catastrophic Obsessive/Compulsive Disorders


#621
Once again ROS you are absolutely right.

The drug companies aren't willing to pay you out of charity or on a whim, This is the real world we live in. You have to deal with it by applying legal and scientific pressure. The directors do have a legal responsibility to their shareholders to protect their money and will fight against every penny.

This is the backdrop you are dealing with.

I wish you well in your quest

Chris

#622
.
There were 4 cases in the UK settled out of court last week against Glaxo, and plenty in the US have been settled IN court. I think everyone in and around the business now accepts that DAs can and do cause severe OCDs, though they still may argue whether the odds are 1 in 2, 4, 7, 20 or 1,000.

They therefore fight each case on an individual basis, spending their efforts and money on proving someone DID see the warnings, or was continuing to take the drug because they enjoyed it, or they were legally out-of-time.
.

#623
Hi,
There is no doubting the fact that Dopamine Agonists do do the job they are meant to do.In a way they do too good a job.Therein lies the problem.These medications actually give a person a new lease of life enabling them to feel normal again,to function as they want to and used to do.So when is the line crossed between doing good to creating problems.I would have to say FROM THE VERY START.I have been completely taken off Dopamine Agonists(Mirapexin),well snatched off it by a Neurologist and PD Nurse who did not give me time to relate my "Two sides to the coin view".In fact that may be a good title for a poem on the matter.
In wishing people good luck in their individual claims which amassed resonate as a collective petition against Dopamine Agonists.I wonder what the miracle cure will be and when it will become available for those kept away or(wrestled away in my case)from those,especially Younger PWP,who need it as a stopping block before the"GOLD STANDARD"(don,t make me laugh)drug for controlling PD gets rammed down our throats.
I see the future Oh so clear!,PWP on diagnosis being rushed on to Levodopa meds,a big concern if a YPWP,in my case 47 and given Sinemet,which,guess what,have worse side effects than the DA's.Right there in Black and White,also listed in the side effects section are the numerous warnings,including "AN EXCESSIVE DESIRE TO GAMBLE".Okay so DO I take the sinemet or DON,T I.The Neuro and PD nurse say i can take as much deemed necessary to alleviate my symptoms.Big problem there my thought at Tangents ricochet.So i can basically take a drug at a young age,at elevated levels of my choosing,giving me a myriad of side effects,including those i had on DA's,with a prospect of being in a desperate state within a few years with guess what,symptoms which mimic Parkinsons anyway including"loss of control over voluntary movements of everyday life"(another warning on the leaflet).
This is all okay though all warning bases are covered.So without any desires of the sufferer,Neurologists can just steer everyone away from DA's and bring that PWP's functioning life to an earlier conclusion.I have spoken to many PWP who have taken Sinemet for a small number of years and they now ironically have to be given an Agonist based drug to control Dyskinesias amongst other side effects as a result of taking Levodopa/carbedopa for their PD symptoms.
When i was given Mirapexin the Neuro was aware i had gambled on horses all my adult life,but when certain concerns were raised,the knee jerk running scared reaction of my Neurologist left me angry,with my right to have my own say on the matter denied.I was told when given the Mirapexin.It was preferred as treatment in younger people with Parkinsons,because it was deemed prudent to delay Levadopa based treatment as long as possible.I feel i have been prematurely taken completely off it.I understand the issues ,but i surely have a say in what i ingest.
So whilst i wish those before 2007 good luck in their claims,to all those YPWP,diagnosed later than this,your stop-gap treatment is being pulled like a carpet from under your feet.
So i now take only Azilect,am back to the same,well worse actually as i was when diagnosed on Nov 2009,as i refuse to take Sinemet until i really have too.They don,t know it yet,but i have washed my hands of the Neuro and PD WORSE(not misspelt).Am financially worse off since being taken off Mirapexin,because ive not had a decent bet in since.Everyone is happy though because i am back to my old Shuffling,stumbling,mumbling,going to bed early,tossing and turning all night in pain self.
Just wanted to make everyone aware that there are alternative views to this whole issue,some people are left in a state of nowhere to turn now Limbo.I myself have gone back to my original stance before any meds were started,ie un-medicated,or as little as possible,for as long as possible.Am now in search of other alternatives,because i agree with one thing.Neurologists think only of themselves,look down on you in their superiority and think solely of the subduing symptoms now and not the long term.Sorry if i,m being concerned MR/MRS Neuro but i B***** well am thinking long term.
Anyway,have only really touched on how Da's effected me,but will leave that for another day.Will say this though to SPAM95,like the content and balanced view you are giving,including the general public's perception and the Fat,Alcoholic,and Drug Addict Analogy's.Of course a big welcome back to ROS also.
Just skimming the tip of the iceburg,
Take care all
Titan

#624
.
Hi Titan, long time no see! Many thanks for your nice comments in my absence.

Your post here seems to be about the positive aspects of DAs, and the right of those patients (probably the majority) who remain unaffected by their OCD side effects to be prescribed them. The positive effects of DAs seem to be to provide an overall quality of life better than that achievable from other drug classes, and by delaying the start of L-Dopa medication it is believed that the patient will enjoy an extended, more active and more dignified final phase of their lives.

There is nothing there that I disagree with, nor have I ever. I strongly back anyone's right to receive what they believe to be the best available medication for their condition.

What puzzles me is why you have chosen to post your excellent ruminations here, in a thread clearly entitled "Dopamine Agonists and Catastrophic Obsessive/Compulsive Disorders".

Unless I misunderstand, you are discussing patients' rights, the relative merits of different drug groups and GP/consultant attitudes. All need to be discussed at length. In the right thread.

Regards,

RoS.
.

#625
hi titan,

I am sorry to here your unhappy with being taken off DA's.

I'm one of the pre 2007 people your refer to in your post. I was put on DA's for 2 years with awful personal and financial consequences due to no warnings being given and a complete lack of awareness as to the potential side effects. Then i was taken off DA's and put on to sinemet for the next 6 years ending up with serious dyskinesia and poor mobility. Finally seven months ago i was put on Apo-morphine (a Dopamine Agonist) and reduced levels of sinement! You might say i am now half and half, 50% Dopamine agonist and 50% sinement.

So far the results have been excellent, i got my mobility back with very little dyskinesia and no OCD side effects. Also my neuro is now far more aware and pro-active in monitioring me and thus reducing any risk of side effects. For me its been a WIN,WIN,WIN situation, i just hope it continues like this for a few years to come.

Why don't you ask your doctor to try apo-morphine and sinemet as a combination of a DOPAMINE AGONIST AND LEVADOPA, just to see if works for you!

Wishing you all the best
bluey

#626
Would it help if a spokesperson from Leigh Day could outline the conditions which have to be met for a DA/OCD sufferer to have a chance of success in legal action?
It now seems clear that the manufacturers admit that terrible OCDs can be caused by the drug but many other conditions regarding use and warnings must also be met.
The situation is getting clearer but some aspects still seem very obscure.Can the moderators help?

#627
I agree with all of you (yet again!). Shall we try a new thresd to discuss the legal side of things and leave this thread to its original purpose. I think ROS started it and probably wants it back...sorry ROS

Try this if you want, in the treatment section

Legal side of DAs and OCDs

Chris

#628
I'm happy to go with the flow. My own choice would be to keep everything related to the thread title in the same place (here), including claims.

#629
Hi,
This Pigeon holing obsession is most baffling Ray,I will continue to post where I like and in which way I feel appropriate at that given time.Given the fact that I was taken off Mirapexin due to the very same as the title of this thread,I feel I have every right to post here.My Wife seems to think that our marriage was nearly over because of my behaviour,yet you seem to know different.Amazing Darren Brown type qualities you have.I on the other hand,was and am,an in control out of control person in total control.Depression and the introduction of Anti-depressants was a key feature in my upturning of the capsized boat.
I think Depression is a major factor in the equation when mixed with Dopamine Agonists,or is Depression Taboo also on this thread.Which ever way you look at it,it all churns together in a large melting pot of woe.
Woe is me,and woe is everyone on here,
Titan

#630
.
Where did all that come from, Titan?

Firstly you posted a long and detailed contribution at lunchtime yesterday, much of which IMHO did not logically fit into this thread, which was, after all, started by me for a specific purpose. I therefore explained my position, as I didn't want anyone thinking I was just ignoring your input. At no point was I insisting that anyone couldn't post wherever they wanted; I was just trying to keep the train on the tracks.

Then Spam suggested having a discrete thread purely for the legal aspects. A perfectly valid suggestion. I replied to that suggestion by stating that my own personal preference was for the status quo, but that I was happy to go with the flow: I'd go along with whatever was the general opinion, I see no mileage in wasting our time being pedantic.

And now suddenly I'm being attacked for an apparent obsession with pigeonholing, and for these unfounded allegations about telling people where to post their views. I am then made the butt of sarcasm, and faced with a meander about depression and woe which I still don't understand.

It's good to be back. Can we start again, please?

RoS.
.

#631
Welcome back Ray....here we go again!!!!

Perhaps the moderators will now see that there are some people who are just waiting to attack others, often as on this occasion without just cause. When Ray responds it's usually he who is the culprit. I understand that we have good and bad days but that's no excuse for bloody rudeness Titan. Ray certainly didn't pigeon hole anybody and Bluey actually gave you some very good advice that you might wish to consider. It's certainly nobody on the forums fault that your DA's have been withdrawn so don't take it out on the innocent. If you so badly need the DA's and want them then change your neuro, its a pretty easy thing to do.

I'm sick to death of people who think that they can just wade in and attack for no reason, just when we all thought this stupid behavior had stopped!

Well doe Ray for keeping your cool and remaining polite!!!!

Glenchass

#632
Goldengirl

I've sent your request to the ICB steering group who in turn have forwarded it to Leigh Day and Co. We'll let you know if we hear anything back.

Ezinda

#633
Thanks Ezinda.
It would help a lot of people I am sure, to know exactly what a successful case requires.

#634
I agree with Glenchass that the attack on Ray is uncalled for.
No-one wants the forum to deteriorate in the way it has done in the past.
However I do think that Titan is in the grip of withdrawal from the DAs and in turmoil.
My husband suffered terribly in coming off Requip and ended up in hospital for a month receiving medical and psychiatric help which is ongoing after nearly a year.
To Titan I would say seek help as you are depressed and lashing out at anyone and everyone.
You can be helped by the right people and life can be better.
Please speak to the GP or the helpline.
I am so sorry you feel like this and send my love.Take care.
Goldengirl
X

#635
Hi,
My apologies,I did not realise that this was the "Ray thread",under which Ray also acts as moderator also.These last number of months must have been a dream,as Ray says that my views are not relevant here.Well you offer a person support and that's the thanks you get.Well numerous people did warn me,this is the backlash for being forgiving and standing up for a persons rights.I thought freedom of speech prevailed here.I thought things may change for the better.I will have to take myself to somewhere where this exists,on a more welcoming site.
Thank you Golden girl,your consideration sees that that others don,t in their baying for blood.I have many thoughts,and yes I have been through an ordeal and put my family through it as well.Yet my thoughts may as well be dust in the wind.
So as a candle snuffed out by many breathes,darkness returns where a flame rekindled lived in hope.I now see there is non here.
search your souls
Titan

#636
titan, i feel what your saying is little unfair! Lots of people including ray have offered you advise and support on a number of occasions over the last few months. Reading your last post it feels to me your in the grips of DA withdrawal syndrome, because your posting displays some of the side effects associated with this.

I urge you to seek professional help.

all the best
bluey

#637
.
Hi Titan.

I think you'll find that any suggestion that this thread was "mine" was initiated by Spam95's contribution:

"Shall we try a new thread to discuss the legal side of things and leave this thread to its original purpose. I think ROS started it and probably wants it back...sorry ROS"

As for previous words of fair-weather support, I'm hardly so naive as to believe such transparent utterings wouldn't come without many a string attached.

Sleep well, and may your God go with you.

RoS.
.

#638
I thought more than twice before entering this debate. I'm a 46yo PwP currently using sinemet plus and ropinirole (12mg/day) to control the motor symptoms. I have learned a great deal about PD in the few weeks since I discovered this forum. The most important thing is that I now understand much more clearly the non motor effects and side effects that I am suffering/enjoying.

I'd like to thank all the people who have shared their opinions and experiences. You have probably armed me with the knowledge to fix my particular version of the OCD experience before it does something irreversible to me. I am sure there will be lots of other people quietly absorbing the important information here and regaining control of their lives.

I notice also that the debate is getting more heated. Please be gentle with each other. The discussion is too important to waste time, goodwill and patience arguing over the small stuff. I have great respect for you all for your courage and openness in sharing your stories.

Elegant Fowl

#639
Thank you Elegant Fowl for the feedback. Just another example of the vital role this thread and forum plays in providing info.

#640
Well said EF, I know just how you feel. This forum and in particular this thread helped me to see that I wasn't alone trying to deal with 'DA fallout'. It allowed me, for the first time to talk about my experiences with people who understood just what had happened and didn't judge me. As with many of the symptoms/experiences and side effects of drugs that PD brings it's hard to understand until one has experienced it.

Thanks to all on the forum for their support advice and banter, where would we be without it....it's a lonely old world!!!

Glenchass