Med Establishment vs the People Affected

I have no real desire to support the moderators of this website as I find their interventions a little heavy handed. But I have to side with them on the issues of OCD/DAs.

There is a comparison to be drawn between the discussion of OCDs caused by DAs and the MMR / Autism discussion we had in the UK a few years ago. The basic problem is that some people thought that the MMR vaccine given to kids was the cause of the autism which, by its very nature, begins to exhibit itself at that part of the life of the child. It has now been proven that there is no causality link between the two events. The impetus for these thoughts was a concerned public, a wayward scientist and the media.

But for many years there was a confusion, which caused some mothers to not vaccinate their children, which caused a significant rise in the number of kids who died or suffered from measles etc. Now vaccination rates are returning to normal and the infection rates are falling again.

It appears that a number of people who were severely affected by the terrible disease and treatments were able to seriously effect the health of others by literally 'scaring them to death'.

In the MMR case it turned out the parents' thoughts about the cause of their child's autism was wrong. It turned out that the medical establishment were correct and that, in the UK, it is a fact that some children died because they did not receive the correct vaccinations at the correct time.

You cannot allow the hype of severely affected people to dictate the treatment patterns of other people. The parents of these children should have waited until their case was proven.

Applying this thinking to the DA/OCD discussion I feel it is VITALLY important that these poor people who feel their lives have been devastated by these drugs, work with the medical establishment and prove their case. I understand it is going to be difficult but it is the only way that you should try to change this. The mainstream medical establishment need empirical data and facts. They cannot be expected to change their minds until the statistical proof is in front of them.

You can lobby for more research, but I feel you cannot expect treatment changes until your case has been proven, to the satisfaction of the mainstream medical establishment.

Psychological disease states can be assessed in trials for drugs, so this must be done, to everyone's satisfaction, before wholesale changes are made to the treatment regimes of PWP. This include variations in cultural and economic influences.

Add to this the potential legal issues here, I can really understand the difficulties this forum's moderators have to take into account. In this case. they are the face of 'the medical establishment' and any comment they make has to be provable.

I wish them the wisdom needed to handle this difficult issue.

You have stated quote 'You can lobby for more research, but I feel you cannot expect treatment changes until your case has been proven, to the satisfaction of the mainstream medical establishment.'unquote

The case has already been proven by others with PD who live in other countries. Their cases have already been heard by the courts and won! So why are we not on board with them, they have the right to sue...why don't we? We should have the same rights as them, but at this time we do not.

We don't want your pity for whats happened to us....we want your support!!! We are not lying or making these facts up, they have happened!

I rest my case

Hello SPAM,

" cannot expect treatment changes until your case has been proven....."

The case HAS been proven - time and again - in both civil and criminal courts around the globe. Supporting scientific evidence in all cases being willingly provided by some of the greatest neurological brains in the world. Had this not been the case, there would have been NO quiet out-of-court settlements (designed to attract the least publicity), no retraction of products from the market and no low-key OCD project teams being set up by the likes of PUK.

We now know that researchers have been aware of a link between Parkinson's medication and OCD's since the 1970's, that's getting on for 40 years already. If you add on another 50 (roughly the time it took to get anywhere with Thalidomide) you can see why the pharmaceuticals want to drag it on and on in the hope that we'll all just give up.

Well YOU can give up, but I certainly will not.
SNAP Radz...well us both me thinks.

Hi Glenchase.....great minds think alike......I'm in for the long haul and so pleased you are as well.....something needs to be done.

Radz xx
Thank you for your quick and understandable replies. I agree that there have been some medical reviews that concur with your comments. But I want to turn your question back on you.

Why are the main stream medical establishment simply NOT tearing up the 'old ways' and instigating different drug regimes? Why would any medical health care professional keep on prescribing a drug that is so bad? Could it be that the evidence is not yet strong enough?

More research please, not enforced drug changes.
Hi Spam,
i think you may be a bit behind the times

to quote:

additional recommendations regarding dopamine agonist use in PD have been published by Weintraub, university of pennsylvania

Obtain a careful patient history before initiation of therapy; ask patients about any personal or family history of ICD or related behaviors.
Educate patients and caregivers about ICDs.
Use the lowest effective dosages of dopaminergic agents.
Ask patients and caregivers about the development of any new or increased urges during therapy (these behaviors may not seem abnormal to the patient).
Monitor patients and screen regularly for multiple ICD behaviors (eg, the Minnesota Impulsive Disorders Interview helps determine compulsive gambling, sexual, and buying behaviors).
Clinically significant ICDs warrant consideration of immediate reduction or tapered discontinuation of dopamine agonist therapy. Urges were reported to resolve when the dosage was decreased or stopped; the risk/benefit of further therapy depends on the severity of PD/RLS symptoms, the severity of ICD symptoms, and available treatment alternatives. Case reports suggest that switching to a different dopamine agonist or undergoing counseling may provide some benefit.
Alternative pharmacologic agents should be considered on a case-by-case basis, and their use depends on patient- and disease-specific factors. Other agents for PD include monoamine oxidase B inhibitors, catechol-O-methyltransferase inhibitors, anticholinergics, and amantadine.
If an ICD is suspected and the clinician needs assistance with assessment and treatment, the patient should be referred to a psychiatrist for evaluation and management.

Some leading medical professional sites now publish the above as additional recommendations to the rather pathetic few lines in the pharms advice.
in other words the medical establishment is on the move, its just a few of the slower prescribers who are left behind.
That article seems to fulfil what people want to see and I expect it is forming a part of the thinking of PD specialists throughout the UK. but the changes are slow in coming because the weight of acceptable evidence is still not there. We need more research from good quality sources to add to the pile of evidence.

But that is what I am advocating. Do not ask for drug changes, ask for more good quality research into the whole thing.

But thank you for bringing that article to everyone's attention.
SPAM in response to your 18:06 post:-

"Could it be that the evidence is not yet strong enough?"

The answer is a simple "no." In fact it couldn't be clearer - even more so now that we've managed to unearth the one real statistic from within Dr Breen's gobbledygook. 24% of Parkinson's patients given DA's at normal PD doses will experience OCDs. Extrapolating from this figure we can currently conclude that the other 76% are using their DA's perfectly happily, are experiencing NO side effects of an OCD nature, and believe these drugs are hugely beneficial to them. This latter group are, naturally, keen to continue receiving their DA's.

So from the drug company's viewpoint DA life is very straightforward. 76% of DA customers are extremely happy with the product, and this represents trillions and trillions of dollars' worth of income to them worldwide. The scale of the sums involved is absolutely mind-boggling. OF COURSE these companies are bound to be desperate to keep any information about the remaining 24% from the public - at almost ANY cost. News about the hundreds and thousands of personal tragedies and catastrophes must (for them) be kept from the wider world forever - or cost them billions if their credibility is questioned.
And in response to your 18.45 post SPAM.....

".... the weight of acceptable evidence is still not there. We need more research from good quality sources to add to the pile of evidence."

If you really believe that after 40 years of research there is still insufficient acceptable evidence, and that yet more research is necessary to add to the mountain, I'd give up if I were you. All the information is there, as plain as can be. We merely need to restrain the drug companies from putting huge resources into keeping it pushed under the carpet, and manoeuvring the media away from the subject.
It is not up to me to decide if the weight of evidence is there to warrant changing the drug regimes. It is entirely up to the powers that be in the medical establishment.

It seems they are not really changing much. Why?

I will advocate changes to this regime only after the researchers have done a complete study of this tortuous issue.

Not that my thoughts are important.... I admit I don't have all the answers. If I did I wouldn't be asking for proof.
Hi Spam95

You are wrong!

The medical establishment are changing their position on OCD side effects associated with DA's, albeit far to slowly. This is not surprising however given Pharmaceutical companies want to protect profits and the majority of Doctors prescribing DA's are GP's not Neuro's. GP's are generally lagging behind in their knowledge of the OCD issue. Nearly 20% of the DA's prescribed to patients displaying symptoms are done by GP's and not Neurologists?

Furthermore it is wrong of you to imply no significant research has so far been undertaken. Last year the results from a comprehensive 3 year study were published by a world leading PD Research centre which involved more than 3,000 People, i would call that very significant. The results showed a direct link between DA's and Pathological behaviours in 1 in 5 of people who took part.

Further research in 2011 also highlighted an increased risk of OCD side effects for those people on maximum daily maintenance levels up to a quarter of those involved experienced pathological side effects.

Maybe it would be an idea if you read these reports in full. Also i would be interested to know your daily medication regime, eg are you taking the daily maintenance dose of DA's?

hi again,

I think i found the answer to my previous question.

I'm sure you will correct me if i am wrong, but is your main medication not in fact sinemet? The only DA your taking is one 0.5mg slow release tablet at night time. 0.52MG tablet is a very low DA dose and is way below the daily maintenance level recommended by manufacturers of 3.3mg per day?

Therefore i find it even more worrying you should start a thread challenging the OCD findings when;

1) You appear not to have read in full any of the approved published findings during the last few years.

2) You appear only to be taking DA's at a very low dosage level. In fact according to the manufacturers of mirapexin, they stated clinical trails concluded total daily dosage levels below 1mg (taken on their own) were far less effective in combating PD symptoms?

Maybe if your doctor put you on 6 times more mirapexin than your taking, eg 3.3mg per day as recommended by the drug company, then you might not dismiss the OCD issues so easy?
Morning all
just a note to say i fully support what glenchass,radz and blueeyes say on this thread and i was also badley effected with ocd/cpdisorder.
more people who speak out about this against the medical and drug companies the better and must relieze the devasting effects on pwp and there families,this i feel very strong that this subject has to be firmely kept in the open for everyone to see.
we will not have this swept under the carpet ,we will kept on bringing this to the forfront of everyone minds and let them know.
i expect this will offend just about everybody, but i can't resist

possible future OCD headlines:








(no thats gone tooooo far)

no offense meant,

i may be away for some time

That is genius.

Thank you for the interesting comments.

I am not discussing whether or not these drugs affect people's lives. It seems that there is much anecdotal evidence that it does. I, personally,could be on your side.

But the main point is that the drug regime has still not changed in the mainstream UK medical system. If it had changed there wouldn't be this clamour on this website.

Can someone tell the scientific world what it is exactly you want. A short ,concise paragraph that can be debated.

I must declare an interest for the sake of clarity. I am a PWP and now I take only Stalevo after trying to control my symptoms with Mirapexin and Sinemet. I have never suffered from OCDs and all of my symptoms are physical. I am also a Biomedical Scientist and I am used to the world of peer reviewed scientific publications and accepting 'best practice' notifications.

I am not trying to act as a defender or spokesman of the medical establishments but I am interested in understanding your collective case, which so far has been presented chaotically by a number of people.

I am sensitive to personal slights so ask people to not do that.
Quote, " I have never suffered from OCD's. "

That's because your total DA dosage is one 0.5mg slow release tablet! Even then your only taking the 0.5mg tablet just before bed time. Try taking 3.3mg of mirapexin a day because that's the dosage level thousands of PwP took when impacted by OCD side effects!

Quote, "I am used to the world of peer reviewed science publications "


I disagree with your comments. In particular those in which you stated the OCD case has so far only been presented chaotically by a number of people.
I am struggling with this thread but persevere since it affects me personally.
So far:
!) Greater responsibility must be taken by both drug compaanies and prescibers of DA's
2) This can only be done if the information is to hand, which court cases have shown is the case right now
3) Recommendations have been made that prescribers of DA's are vigilant in their initiaton & continuation of the prescripttion ( my experience is that it is far from the case that these are followed. If I were to be cynical I would say not even read)
4)There is much research that shows a direct link between DA's & OCD/ICD behaviours, enough to allow compesation claims in the USA to be awarded
5) Futher research can only be a good thing, particularly as many pwp do well on DA's & want to continue taking them, but will it help the situation in the here & now?
6)Drug companies have a vested interest in not supplying the available information
7) Compensation is being awarded in other countries, based on available research, but not in the UK

But where from here?
Off the top of my head:

a) education of pwp re the link between DA's & OOCD/ICD behaviour
b) education of medics re the link between DA's & OCD/ICD behaviors
c) Those who have been so horribly affected to be encouraged & thanked for having the courage make their stories known as a warning to others
d) pwp, having been made aware of the link & potential dangers based on current research should be given the courtesy of making their own decisions
e) It would be a very brave and rich person who took on the drug companies

Am I reading this correctly, or have I missed something & gone along completely the wrong track? If so I apologise