Guidelines to Prevent ICB


#1
I think there is a great fear surrounding coming off DAs and moving on to levadopa.
My husband's experiences after 11 years on a massive overdose of Requip XL show that although the withdrawal is terrible leading to almost nil mobility and severe depression, it is possible to arrive at a point where mobility is almost as good as on DAs and depression very much reduced,
His journey has taken almost 15 months and included a month in hospital at the worst point, 2 months after the last DA tablet.
Much tweaking of tablets has gone on but the neuro insisted that small and often is the best approach (Sinemet every 2 hours) and dispersible Madopar before and after the evening meal to overcome the probs with food in the stomach.
Counselling has adressed the psychiatric probs.
Not an easy journey, but worth it to reach a saner, calmer, more caring relationship with family and friends.
If you have to take this road, be strong. You will get there.
Love GG

#2
Why don't we try to set up a list of things people can do to prevent these problems...I'll start.......

1) Appoint a 'Responsible Adult' to keep an eye on your finances and legal affairs.

2) Inform your family of the potential problems that can occur to your personal life, so they can get involved if you display abnormal behaviour.

3) Agree a course of action BEFORE you start the meds, that will allow recovery from the problems.


...............any more?

#3
... Stick to the lowest possible dose.

#4
I realise that newcomers are viewing this thread and some seem to be unsure what the OCDs (?now ICDs) entail.
I wonder if it would help if sufferers posted their stories on the thread so that the full range of behaviour is demonstrated?
Here is the first letter I write to GlaxiSmithKline re our horrors.
I have removed all identifying details.
The outcome after several letters and legal advice is that the cannot be sued nor can the consultant.

"Re : Damage caused by Ropinirole/Requip XL

My husband has had Parkinsons Disease for 10 years and was treated with Ropinirole for the first 8 years in increasing doses. He is 67 and we have been married for 46 years.
About 2 years ago he moved on to Requip XL and his dose was increased to 36 mg a day.
Soon afterwards he began to change, becoming very secretive and missing for long periods. He was aggressive when challenged, said he was addicted to golf etc and my family and I thought he was showing signs of dementia.
2 months ago we found out he had been in a relationship with a young Malasian woman throughout this time.
Over the 2 years he became obsessed with her . He gave her £30,000 in cash finally cashing in all our investments of £70,00 and putting them in a new account with his name, her address and giving her access to the card and pin number. This money was fortunately saved from her clutches.
He also made detailed plans to leave me and live in a small flat.
He felt an uncontrollable compulsion to be with this woman and give her the increasing amounts of cash which she demanded fuelled by her constant promises of sex, never delivered, which she persuaded him would be amazing and successful. He felt in a constant state of unfulfilled arousal and now admits that he has been addicted to pornography for the last 6 years. He has also been a voyeur for some years.
He covered his tracks very cleverly and we had no inkling of his derangement.
We know now that the DAs have been responsible for this complete character change, betrayal and deceit. We were unaware of the possible side effects affecting approx 20 per cent of patients on dopamine agonists ( figures provided by the Parkinson’s UK Society and the American “Archives of Neurology) Your leaflet mentions from 2007, no previous warnings) as” uncommon side effects” affecting “more than 1 in 1000 people” “ increased sexual desire and behaviour that is unusual”.There is no mention of the obsessional and compulsive behaviour that research continually refers to.
The Parkinson’s uk website has a paper with this heading outlining the many ways this may affect patients taking Dopamine Agonists.
His consultant has admitted ,in writing, that his complete character change was caused by the drugs.
Previously my husband had always been a faithful, loving and kind husband ,father and Grandad.
We have found such a wealth of information on the internet mainly through the Parkinsons Disease Society website . Our Parkinson’s nurse has also been a wonderful help.
My husband is now reducing the drugs and replacing the Requip with L Dopa.
We do not know whether our 46 year marriage will survive.
He is suffering dreadful withdrawal symptons such as aggression, depression, panic attacks etc.

My husband tells me that part of the thrill induced by the drug was in deceiving everyone about his double life and that he answered “no” to the brief and perfunctory questions about increased gambling and sex drive asked by his consultant. As his carer I was never informed of any potential side effects.
We have suffered terribly in trying to unravel his activities, the loss of our savings and trying to hold on to our marriage.
Whilst I accept that 4 out of 5 people suffer no ill effects from your drugs, you have not issued sufficient warning in the accompanying leaflet,or any warning at all for the first 7 years he took the drug, or ensured that doctors know the scale of the problems that may overwhelm their patients ,or ensured that carers are warned to look out for the symptoms that might suggest their partner is becoming devious and getting involved in deeply destructive activities.
I would like you to consider how you may compensate my husband for his financial losses, the wreckage of his family life and the suffering he is enduring as a result of taking these drugs for 10 years."

It is hard to see it all out in the open again but I hope someone somewhere reads it and finds help before they, like us, are engulfed.
Love GG

#5
Good advice spam95,

Having someone keep a check on your finances and family members and friends being made aware of possible problems to look out for in your behaviour is as much as can be done to stop any financial problems from getting out of hand.

Regarding the hypersexuality side of ICB I don't think that's easy to monitor unless it's with your partner. I doubt most people suffering are going to share this addiction with family and friends. Not sure what can be done to prevent this type of behaviour from causing problems in relationships.

Gill.x

#6
IMHO
the maximum recommend dose for requip xl has been 24mg and has been for at least 5 years. anyone prescribing more than that should have a damn good reason. 32 mgs was reckless.
i personally believe no one should be getting more than 16 and people should be put on to low doses of levodopa earlier.
I would be interested to know if anyone suffered serious ICB on 16 or less mgs.
if the problem is strictly dose related it can be solved once and for all.
otherwise more complex rules need to be instigated.
to me, the problem and solution is with the prescriber.
the patient is in effect insane and can not be expected to prevent the awful outcomes that have happened.

on the other hand, people given sensible doses of DA should not be over-worried - it is a group of drugs that are very usefull especially, in my opinion, when combined in low doses with levodopa and mao-b inhibitors.

#7
I like the ideas Spam puts forward. I hope they get noted by PUK and considered for inclusion in their literature.

Re your comment Turnip "the patient is in effect insane and can not be expected to prevent the awful outcomes that have happened." As you can imagine there are legal definitions and Acts that govern medical practice and this area is governed by the Mental Capacity Act. Before anyone can take away patient choice they have to be able to prove incapacity by the denitions of the act.

http://www.justice.gov.uk/protecting-the-vulnerable/mental-capacity-act

If the patient refuses to take advice it makes it very difficult.

Similarly Leyther made a comment elsewhere about the involvement of family when a patient is on DA's which I agree with but the patient again has to consent as this is governed by privacy and confidentiality laws so for instance if a patient attended an appt alone you would have to get their permission to contact their support person and also their agreement on what information can be shared.

#8
Hikoi

If the newly diagnosed have the potential problems explained to them beforehand then they can make an informed choice as to whom they want to monitor them or indeed if they want to be monitored at all.

Goldengirl

Speaking from personal experience and the explanation given me by my neuro.
Mirapexin is a drug that relieves the symptoms of PD, helps as a muscle relaxant, and has some neuroprotective qualities. I understand all DAs to have a similar effect.

The main role of DAs is to use them as an alternative to levadopa. The more levadopa a patient takes and the longer it is taken the more chance of dyskinesia etc,

DA's are useful drugs but are nowhere near as effective at reducing the symptoms of PD as levadopa.

I have written about my experiences on DAs ad nauseum on these pages and others.
The crux of the matter for me is not what I did whilst on these drugs but what procedures should have been in place to prevent their occurrence and how best these can be implemented.

The PUK have made an excellent video with regard to prescreening patients and I understand a similar one regarding monitoring patients is imminent.

What concerns me is that there is no authority that enforces these beneficial changes on all neuros and without that you wont see change where its needed.

Leyther

#9
hi Leyther
I agree with all your points, well put.
A peculiar thing I found though is that a small amount of DA stops restless leg where a large amount of LD does not. I suspect the DA targets the offending neurons specifically. So there are times where DAs are necessary.
Some neuro whose prescribing is careless and ignorant needs to be sued (or rather their trust) - that would soon halt over prescribing and I believe it is bad prescribing rather than the drugs themselves that are the problem now.

#10
It needs to be made procedure for the health professionals to encourage newly diagnosed pwp and families to actively be aware of the drugs they are prescribed. I'm an adminstrator of a pd site and one thing I have observed is the amount of pwp who do not have a clue what drugs they are on or about PD. Some have had PD for years and are suffering terribly. Why can't the health professionals get their act together and design a booklet that introduces them to the drug treatments of PD with some useful links to support sites etc? A drugs diary would be a good idea too? Would cut down on waisted time and unnecesarry suffering!!

#11
Hi,
The easiest way of introducing my feelings and thoughts to this thread,is via Spam 95's 1,2,3 step approach,answered as brief as possible.I have reams of thoughts and ideas and personal experience on this and other issues.However,sometimes you wonder whether it is all worthwhile.There will always be conflicting views and opposing "camps of thought".Though not many have looked at this particular issue from every,and I mean EVERY angle.
No single person is exactly the same,some may be similar,some may agree with others completely to the point of feeling exactly the same.That is a big problem.Huge sweeping gestures of idealism will just tidal wave back into the faces of those thinking matters can be resolved as easy as 1,2,3.
The thread next door on the same issue in regards to the compensation push,makes me want to scream.I have a huge essay written covering every aspect,but I really just don,t see the point any more to post it.

Spam 95 - point 1
---------------------------
How can someone diagnosed with Parkinsons not be deemed a responsible adult,they probably hold down extremely responsible jobs,perhaps even dealing with vast sums of money.So at what point does that person,or family member or friend tap them on the shoulder and announce that they are not responsible.At what point indeed would they even notice.
How many people diagnosed with pd have always been the person in the family who have control over all the finances.Also,having control of their parents finances and in laws finances.In my case,I am the one person everybody turns to for advice,financial or otherwise,because that is the way it has always been.
I would resent totally being asked or even told to appoint someone to watch over my finances and legal affairs.It may appeal to some,but talk about making a person feel even less of a person,when still a responsible adult yourself.Well that takes the biscuit,well the whole cookie jar actually.
At what exact moment can this be implemented then.Everyone is different,everyone already has existing issues,compulsions,marital difficulties,mistrusts,hang ups etc.A persons liberty and freedom of choice cannot be taken away from them at any stage,just because of a pd diagnosis or progression of.If a person wants to spend money,sell property,it belongs to them,why can,t they.Who is to say they are wrong.One persons excess is another persons norm.

Span 95 -point 2
-----------------
Informing family of potential problems,spotting abnormal behaviour,then doing something about it.This may work in a few cases.Those who are compliant,or lead a very ordinary life,were the slightest touch of extreme is highly unusual.It may help.
However,again we are all different.In my case I have always swung from one extreme to the other.This has always been totally normal to me.It is only in the last few years and especially recently that I have been found to be suffering another condition/conditions which explain a lot of things/problems since I was a kid.So,DA side effects were just an extension of the norm for me.How could my family spot that.I am 48,nearly 49 and have gambled to varying extents,almost on a daily basis since the age of 20.Nothing unusual to see me all day in the bookies.Same with everything else,drinking,extreme fitness fads,obsessions,self harm(in its many varying forms),and other things.
We are all different,sweeping family involvement is impossible to achieve for a wide variety of reasons.They can be implemented,you can try.But don,t hold your breath.

Spam 95 -point 3
----------------
A course of action before starting meds,allowing for recovery from problems.Impossible,just as some people take meds religiously,on time,in accordance with leaflet guidelines.There are those who can not,do not,don,t want to.Well that is they're own problem you could say.No,it is them as an individual.We all harbour our own little secrets,many are not completely honest when giving details to the Neurologist on diagnosis.This is human nature.Who is going to say"I watch porn regularly",especially if the Wife or partner is there with them and has no idea,they may see other men or woman also(affairs).Honestly,how many will admit that.How many are going to admit to substance abuse or extreme gambling.Indeed,what is extreme in these cases,"WE ARE ALL DIFFERENT".
Problems are generally only realised when they reach extremes,this will always be the way of it.So lets blame the drug companies and Neuro's for that shall we.Though I will have to leave that particular rant for another day and thread.
You can,t have a course of action by starting "off course".It is as simple as that.Plus life itself,can blow any of us off course.Some of us were already off course before Parkinsons,but did not realise it.Though those who get vexed over pd prejudice don,t seem to think the same way about people suffering other problems along With pd.They do not understand this and are intolerant to this,or blind to it.So how do you expect the Neurologists to read minds,understand other psychiatric issues on diagnosis.They can only go on the personal and medical information they receive.We are all so varied/diverse.
We are also guinea pigs to the drugs we take.Maybe us,maybe our children even,if young on pd diagnosis.Taking any drug is a risk.Trials can only go on for so long,such is demand(though i won,t stray there today).So everyone should realise that side effects will happen,it is a fact.Meds are adapted as you go along,a course of action before could be changed to an "action plan" as you go along I suppose.However,from previous medical experience this can be twisted,manipulated or even dreamed up at a later date in order to deceive.So has little use,only as a history or record."Now where did that missing file go?".Diversity is the spice of life.
Black and white is almost always grey
have fun
Titan

#12
Spam
You asked for ideas and there are a couple added, personally i cannot think of any more. i wonder if you just saw this as a discussion to remain here. Maybe it could be developed further with each section expanded with prompts because I think it has potential to be a useful resource that complements what PUK have developed already.

#13
Titan
You make some very interesting points. I think overall you are saying guidelines are pontless or misguided and i diagree but all the same I like some of your thoughts.

#14
Instead of a Parkinson's Awareness week being aimed at the public it would be far more beneficial if it were aimed at the Neurologists.

Ideas, guidelines, booklets, videos, seminars or Parkinson's the musical are of no use to the patient unless they are taken seriously and implemented consistently by all who are involved in prescribing drugs to PWP.

#15
I would like to make a couple of points about my own experiences of da's and their attendant problems :sunglasses:

The incidence of side effects is I believe higher that we have been led to believe:disappointed:
I experienced sides on relatively low doses began between 10 - 16mg
:frowning:
Making our families/ friends / employers thought police is impractical and leads to strife for all concerned
:imp:
:frowning:
Greater publicity is needed in the newly diagnosed to inform their choices
:exclamation:
Self determination is a human right and should not be the preserve of doctors/drug company reps and ill informed self proclaimed experts.
:imp:
PWP on da's can scare family and friends alike they see changes we don't, however the greater fear comes from within the Parkinson's community from those who should understand the difficulties faced by individuals experiencing side effects.
However there is a vocal minority who although claiming insight have punished, rejected and sought to enforce their gospel above the individuals own well being and justify their actions by its our way or the highway phillosophy.
:frowning:
If you are unfortunate enough to experience such difficulties you will need to decide for yourself to end this road trip, because ultimately we have to decide to seek help and stop taking the da's.
:sunglasses:
We then regain our direction and ourselves and we Do NOT NEED THE SANCTIMONIOUS SERMONS OF THE PREVIOUSLY REHABILITATED.

Best wishes and love to all pwp and their families who struggle with the illness and its medical responses.

#16
I'm speaking on behalf of others here so I'm sorry if I misrepresent anyone.
The others are those I have spoken to who have had problems as a result of these drugs, who I have helped the best I can and have helped me in turn.

There are no "experts" that's the problem. Those who have been through the mill with the effects of these drugs have had to sort themselves out.

There has been little understanding because the neurologists depend on the patient for feedback and because of the nature of the behavioural problems we dont tell them much.

Do a few searches on this forum.

Try these names: Poker, Cutiepie, Blueeyes and there are loads more. Read what they have been through.

We are not heroes, nor should we be seen as victims.

We are PWP given drugs to help us and we are grateful they exist.

Everyone knew there were side effects, they were all listed on the drug leaflets.

What no one expected was the amount of understanding required by the patients and their families and the degree of monitoring required.

If I am a victim of anything it's circumstance.

Divorce meant no one close enough to compare the behavioural changes.
A sympathetic employer and a declining workload (they gave me a laptop and told me to work from home) gave me the ability to do as I pleased.Which, I did.

Why didn't I stop?

To explain let me paraphrase Billy Connolly, whom from what I can see will be joining our ranks soon.

On discussing the Catholic church and it's view on contraception, ".... at the point of ejaculation withdraw!

"Withdraw! Only a celibate could write such a thing!"

" At the point of ejaculation. A team of wild horses shackled to my arse could not get it to go in the opposite direction."

Those affected by these drugs have done their best to get through the problems with minimal help from professionals.

It will be ten years since I was diagnosed on 24th February. Ten years of taking these drugs. Ten years of watching my bodily functions deteriorate. I need these drugs as do all of us but we also need to know what the dangers are and be confident that the care we receive is adequate to prevent behavioural problems.

I've heard so many people say "I am not affected at all" only to exhibit signs of typical DA behaviour. We are all different but the majority of the traits are similar. Everyone is at risk, education and care is the solution, we need these drugs to function.

How do you think psychologists gain understanding of any addiction? By talking to the addicts, that's how. finding out how they tick.

We are all still on a learning curve its a steep one with regard to DA's

Unfortunately the curve tracking the help we receive is nearly flat.


This forum's purpose is to support and help PWP. This thread was about guidelines to prevent ICB from being a problem

BJS your line:

"If you are unfortunate enough to experience such difficulties you will need to decide for yourself to end this road trip, because ultimately we have to decide to seek help and stop taking the da's."

Why is it that it is readily accepted that drugs like Ecstacy, LSD, cannabis, cocaine, alcohol can alter our behaviour? Yet prescribed medicines apparently arent a problem.

IN your profession, child protection, you must have come across heroin addicts.

Is that how you deal with them?

You then have the audacity and arrogance to tell us that we are sanctimonious and that our views are unwanted.

Everyone's brave sat behind a computer monitor.

If you want a proper debate do it in person.

I'd gladly attend any organised and properly chaired meeting on this subject.

Provided there is an action plan, not just talk.

Leyther

#17
I would obviously like to respond :sunglasses:

:confused: I don't remember saying anything about you at all Leyther! I described some people in the Parkinson's community who's approach had been unhelpful rigid and inflexible and yes sanctimonious, if you believe that applies to you?

:laughing:I am not and never will be a victim of Parkinson's, meds or of anyone !

:rolling_eyes: My job has little to do with my post but you pose a question relating to addiction and I can answer yes addicts do get my sympathy and assistance but remain addicts until THEY decide on a different path and they should be supported whilst they make their mind up having weighed the full implications of the substance abuse.

Many of us were Not making informed choices as the information we were given was incorrect or limited,

:laughing:I never hide I really don't need to! As one of the 'addicts' you described I decided for myself to not use these drugs anymore and the choice was ultimately mine, We agree on one thing those amongst the community who do experience this issue require help and support.

I believe in help and guidance not diktat :frowning:

Its sad that an opinion can't be expressed without it being personalized.:astonished: or trashed because it doesn't go with the flow :disappointed:

#18
Ten years ago pwp werent as informed about DAs as now.

Taking DAs without that knowledge with all the other things that life and PD brings was catastrophic for a few.

This is now a well accepted fact.

The "few" having spent the last decade trying to convince the unaffected that there was a problem, living with the problem and in some cases took out law suits to no avail may get a bit peeved from time to time.

Especially as they may be in considerable debt and have lost their relationships as well.

They have become self appointed "experts" because no on else, has given much practical help until recently and they have had to fend for themselves.

On top of that their PD has progressed too.

If we want to help stop the problem lets bury the hatchet and find some solutions.

Utilise what these people know and work together to a common end.

Sorry to anyone offended by my posts.

#19
I think it is all too easy to be offended unintentionally on this forum because it is our lives and painful experiences we are discussing.

For example, I have an awful toothache, it hurts like hell and if one more person tells me I need to go to the dentist I may well hit them!

As a mature adult I know I need to go to the dentist, I don't need to be told to go!!and I will go when I am good and ready thank you.( Have to take out a mortgage first, just paid £205 for the last visit)Has anyone else got crumbling teeth since diagnosis?. I spend more time at the dentist than in my office at the moment.

Caroline x

#20
It seems our 'imam rights will get in the way. Since the neurologist won't listen to you representative about any aspect of your behaviour, you are gubbed.

Someone needs to either be committed under the mental health act

Or

Commit a crime

Or

The patient regains some sense that there behaviour is not normal for them and that they need to change their meds because they themselves realise the meds are causing you to play golf, go fishing, improves your symptoms, gives you quality of life, ok I've spent a few quid.

Of course the likelihood is it will end in tears.