I have just checked my neupro patches. There are references scattered about under various headings:
You May experience the following side effects: Covers most of what it should but not quantified and ends with "Tell our doctor if.............he/she will discuss ways of managing or reducing symptoms."
Common Side Effects Up to 1 in 10 people List includes increased sex drive.
Uncommon Side Effects up to 1 in 100 people.. List icludes inability to resist the impulse to perform an action that is harmful involving excessive gambling and repetitive meaningless actions
Warnings and precautions Tell your doctor if you or your family/carer notices that you are developing urges or cravings in ways that are unusual for you...........again covers the ground but dneither quantifies nor or addresses the deviousness side of things. "Your doctor may need to adjust or stop your dose"
I have been on the patches for about 9 months now and it will be interesting to see if the neuro broaches the subject with any greater conviction this Wednesday than he did a year ago. . I have raised the issue several times in the three years since they were first proposed to me because of a family history.. In 2009,,, my then PD nurse had never come across this problem. How come before I knew I had PD and as a lay person I had. Years and years ago I decided that my father had some sort of dopamine affliction.
My PD nurse did raise it but in a very hesitant way which was a shadow of what she claimed to have done in her letter to the GP.
It would be interesting to know what warnings are given on other d.a.'s. and even more interesting to know what, if any, warnings have been aimed specifically at the medics who prescribe these drugs.
As I feared there has been no attempt to give the undisputed figures in the warnings.
UP TO 1 in 100?
Everyone now agrees with the Mayo Clinic 2010 figure of 1 in 3 on a therapeutic dose ( the amount taken by someone with Parkinsons) and 1 in 2 of men under 50.
Why does PDUK not tackle the drug companies about these grossly misleading statistics?
And why do so many medics not know ?
And why does BB not know about her medications probable side effects?
I have tried so hard to find a way to overcome the dishonesty and greed of the profit-hungry drug companies who let lives be ruined in pursuit of their billions of pounds of annual profits....£7.6 billion for GSK last year.
Please PDUK come to our aid instead of hand-wringing.
THESE LEAFLET WARNINGS ARE INACCURATE, DANGEROUS AND NEED CHANGING.
It is clearly possible for neuros and nurses to get this right. When I was dx in Aug 2012, my neuro not only spelled out the possible side effects, but had me sign a form saying I had been told about behavioural changes. On every visit to either neuro or nurse I and my o/h have both been formally asked about any possibility of behaviour changes.
My PIL for Pramipexole has a similiar warning close to the top of the leaflet spelling out what behaviour you or your carer should be looking out for.
Ive had PD sine 2009.I take a small amount of 12 meg of requip.It realy hasn't had anymore impulse effects then Ive had previously.Im so sorry your husband attempetd to end is life.There has been great hope for people who suffer emotional distress.Dr.Abraham Low developed a method to help people avoid suicide and mental illness.I was a group leader for 20 years and stiil advocate for Dr. low
While my PD is moderate and controlled well sometimes with meds i now have myoclonus to add to PD.
I use to be depressed before PD for many years.One thing im not now is depressed.I get up and I'm looking forward to a new day,as soon as my body loses the chains of PD,haha.
Many people say depression is unavoidable in PD .It is biochemical like PD and need clinical care.
I'm firm believer and user of Dr.Abraham low method and without a doubt my long battle with depression is won.I take no meds other than PD sinemet and reqipp now.
You can't get rid of our PD but you can avoid emotional strain from it
Dr James Parkinson and Dr.Abraham Low were very similar men.Both were great advocate for the mentaly ill and men of great vision.Sometimes I often wonder if God sends men like these to Earth as a gift to men
I've just had my 6 mth app at the hospital and although I keep on going in my own sweet way doing as much as I can, it wasn't too good news about any help to make things better in the near future. I was told that there were 3 things left for me to try if I felt I couldn't cope, a: Apo Go which I am already on, b: the other meds people have mentioned {I'll come up with it later} or c; DB S. So here we go again!
Hi, I have been reading all the recent posts with great interest. I was DX in 2010/2011, and didn't start taking any meds till 2012, which of course happened to be a DA (Ropinirole). I feel deeply for those who have had all the problems relating to this med, but I can honestly say, I am on 14mg of Ropinirole, that I have not had any of these problems, and hope to god I never will. I can only say with tongue in cheek that I have only, dare I say it, praise for this medicine. It has treated my parkinsons well and I am still on it, with no other medication. It suits me fine. I don't know how many PWP it effects in the way you describe, but it's imperative that all neurologists etc., must be well educated on it's side effects, I was indeed told about the side effects by my neuro prior to my taking it. and I'm glad to say I have been one of the lucky ones.
No doubt we will all have to carry on fighting and battling for justice.
I must have one of the a good neurologist I might say. My physio has also given me a lot of info on my meds and has told me to watch for anything untoward, for which I will. I do seriously feel for the things that those fellow PWP have had to go through in taking this med that has been prescribed for them without any proper consultation.
I use to have another DX long before PD.It was OCD,lol.Well thats before i knew about Dr. Low.His treatemt for compulsion was the same for all the rest of garden variety symptoms.The are just a manifestation of a nervous imbalence caused by tenseness.I can't say it isn't there with agonist but I do know all about compulsion.Sort of like when we becoming fixated on something our minds lock,haha cookie jar,hahaI even took the latest oCD drug livox to no avail.
I do know others who say it made them gamble,but even after off the meds they still love to gamble.
So far Im up to 12 mg requip and no change,One thing that helps to avoid becoming obsessed is have a balenced day,not to much of anything to good or to bad,enjoy the good a day brings and savor our victories
.Of course being close to our Creator is a rewarding experience.He knows all to well our troubles and is there for us.
Apologies that it has taken me some time to get back to you - I've been out of the office a fair bit recently and also wanted to check with colleagues before responding.
The most recognised research in relation to impulsive and compulsive behaviour is still the Weintraub study conducted in 2010 and it's still being quoted in recent papers including this one from last year - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4197852/. A couple of years ago, Kieran Breen (who was then our Director of Research) explained in a forum post - https://www.parkinsons.org.uk/comment/54135#comment-54135 - why this was still the best one for us to refer to and speaking to my colleagues in our research team, this has not changed.
I'm pleased to see that some people have reported being given good information about potential side effects from their medication by their professionals and for us, ensuring all professionals do this is what will be key in addressing this issue effectively (particularly as people only see the information leaflets that come with medication once these have already been prescribed to them).
That being said, given that one of our aims with the new strategy is to support people with Parkinson's to take control, ensuring their medication is working for them (including ensuring completeness of information to inform decision making) would be key to this and so does seem to be something we should explore. Thanks for bringing this to our attention and I'll hopefully have something to report back on soon.
This is my third attempt as post disappears as soon as I attempt to correct lack of capital letters!
Thank you Suma for getting back to me.
I would like PDUK to study all DA warning leaflets and put pressure on drug companies to publish accurate warnings .
It is ridiculous that these leaflets still offer " up to 1 in 100" patients may suffer these side effects.
Even if you prefer to use Weintraub's figures of "over 14 % " , this is grossly inaccurate.
Weintraub includes patients on a non-therapeutic dose for Parkinsons and those on a very low dose for other conditions such as restless legs, as I understand it.
The Mayo Clinic in 2010 gave the figures for those on a therapeutic dose for Parkinson's as 1 in 3 and 1 in 2 for men under 50.
Many patients rely on the leaflets for info on the side effects.
They are put at risk because of the drug companies reluctance to tell the truth.
We need PDUK to act to help patients be aware of these side effects before more lives are ruined.
Since I posted, re. the Neupro (Rotigone) I found a 2014 updated leaflet but it still does not go above 1 in 10 for any of ocd type side effects . If PD UK downloaded the patient leaflets, presumably they would be the latest version .
I seem to be the one out of a hundred (according to the leaflet) who has experienced binge eating.k Its calmed down now but I when I started the patches and I was woken in the night by my Polymyalgia muscle pain I was down in the kitchen stuffing my face in a most unseemly manner. I PUT ON OVER HALF A STONE IN A FEW MONTHS. tHE pd NURSE THOUGHT IT WAS THE STEROIDS i AM ON BUT THE FACT IS THAT i HAVE BEEN ON THEM ON AND OFF FOR SEVERAL YEARS AND NEVER PUT ON WEIGHT Sorry but I cn't be bother to correct the capitals - I am not shouting.
On another subject, I am sure that the number of PWP's is underestimated - apparently there a\re no firm statistics anywhere in the world. Astonishing.
It seems an easy task to me for PDUK to download the DA leaflets, check the warnings and if they are inaccurate press the drug companies to give realistic statistics.
Using Weintraub it would read "at least 14% of patients will suffer ICDs"
I would prefer the higher Mayo Clinic figures...1 in 3.
The warning needs to add that as the dose increases the likelihood of these side effects increases.
The gross inaccuracy of the leaflets at the moment is unacceptable.
17 years ago, on diagnosis, OH was put on Requip and within 18 months was on 24mg/day. On referral to another consultant 10 years ago this was reduced to 12mg/day.That was not problematic.
However, on the advice of our present consultant, to try reducing the Requip by even 1mg over a long period and not every day, but every few days, has proven impossible. OCD is just as bad, even worse and withdrawal symptoms are dreadful! Even our consultant said that getting down from a high dose to a lower one is relatively uncomplicated BUT getting down further is a bit of a nightmare. IMO, these drugs should be banned.
I feel for you, Benji trying to resolve this situation.
When it happened to us, our Parkinsons nurse arranged for my husband to be admitted to an Intermediate Care ward.
He was in hospital for a month and weaned off the drugs completely.
I won't pretend it was easy.... he suffered dreadfully, physically and mentally.
We received psychiatric support and he was put on a slowly increasing Sinemet regime.
The mental health team continued to support both of us for 2 years and eventually the OCDs faded away after about a year.
Now 4 years on he is physically very well but still finds it hard to deal with the knowledge of his drug-fuelled behaviour and all it cost us emotionally and financially.
The only advice I can offer as all else has failed is to ask if he can be admitted to hospital and taken off the DAs under supervision.
As I understand it, if the OCDs are there, even a small amount of the drug will maintain the disorder.
I do wish you the best of luck.....there is life after DAs .
