Hi johnny,
Really glad meds are working and you are able to do things you enjoy again.long may it continue.
Take care Dot xx
hi Kate,
It was on the latest mirapexin 0.7mg information leaflet.
Its under the section "Take special care and consult your doctor if you previously had or develop any of the following problems while taking mirapexin; Psychosis (comparable with symptoms of Schizophrenia).
regards
It was on the latest mirapexin 0.7mg information leaflet.
Its under the section "Take special care and consult your doctor if you previously had or develop any of the following problems while taking mirapexin; Psychosis (comparable with symptoms of Schizophrenia).
regards
I take it that they expect that you will know when your feeling psychotic or schizophrenic and will be able to tell someone.
Good point - how could you tell - I know someone who has schizophrenia and everything is perfectly normal to them, even when it is clearly not.
Breeze
Breeze
Well when i was diagnosed with dopamine dysregulation syndrome i heard voices in my head and when i looked in the mirror i couldn't identify with the person i was looking at. I felt cold and disconnected from reality. I even asked my GP if i had a split personality and he referred me to a psychiatrist who in fact diagnosed a disconnected personality. The reason this had happened is because i couldn't cope with what the dopamine agonist (which was ropinerole) was doing to my mind and i believed i was another person in order to protect myself from the stress it was all causing. My partner said i became a very cold, disconnected person who shown no emotion or remorse. I became very withdrawn from reality and all i wanted to do was engage in what i can only describe as another world. In the end i had a nervous breakdown. Am no longer on the dopamine agonists and thank goodness i got the help i did because i believe i would no longer be here if i had still been in the mental torture i was trapped in.
Cutiepie
Cutiepie
Sounds dramatic and believe me it was!!!!
Thankyou Cutiepie - I now understand how you could identify the split personality problem.
Thank god you had a good medical team who helped you out.
The Breeze
Thank god you had a good medical team who helped you out.
The Breeze
"comparable to schizophrenia " is not necessarily the same as "causing schizophrenia".
It is also under the warnings heading and not under the side effects.
I cannot find an article of research on this.
It is also under the warnings heading and not under the side effects.
I cannot find an article of research on this.
I think Kate your clutching at straws!
So it says "Psychosis comparable to Schizophrenia" rather than causes Schizophrenia? Believe me suffering from serious Psychosis brought on by mirapexin which is "comparable" to Schizophrenia is life destroying! I know from the past comments your always making a defence for the "dopamine agoinists never affected me club". Well good for you, however don't play your games with me and try to rubbish the point i was trying to make. If mirapexin can cause Psychosis which is comparable to Schizophrenia, then why on earth was a Consultant neurologist prescribing this patient nearly 3 times more than the maximum daily dosage?
So it says "Psychosis comparable to Schizophrenia" rather than causes Schizophrenia? Believe me suffering from serious Psychosis brought on by mirapexin which is "comparable" to Schizophrenia is life destroying! I know from the past comments your always making a defence for the "dopamine agoinists never affected me club". Well good for you, however don't play your games with me and try to rubbish the point i was trying to make. If mirapexin can cause Psychosis which is comparable to Schizophrenia, then why on earth was a Consultant neurologist prescribing this patient nearly 3 times more than the maximum daily dosage?
No straw clutching on my part, Blueeyes, I just would like to know more about it as it worries me too. A serious side effect is on almost any drugs leaflet and most people would not be put off if medication was necessary and side effect very rare. After all when I signed for an operation the most serious side effect of this procedure was death, it warned me.
Why I do not rile against the DA's is that on this forum there are plenty of people that do this already and I like to give the newcomers , who are very scared when starting medication, a different view. After all, often people who are happy with their medication, but certainly the majority of PD patients in UK are not using this forum. This is not to make light of the suffering of people for whom the DA's were a disaster. Believe me, I know quite a bit about mental ilness and its effect on the family.
Why I do not rile against the DA's is that on this forum there are plenty of people that do this already and I like to give the newcomers , who are very scared when starting medication, a different view. After all, often people who are happy with their medication, but certainly the majority of PD patients in UK are not using this forum. This is not to make light of the suffering of people for whom the DA's were a disaster. Believe me, I know quite a bit about mental ilness and its effect on the family.
Kate i think you are being totally irresponsible in down playing the risks of some potential serious side effects linked to taking mirapexin, particularly at high dosage levels.
Psychosis (Schizophrenia),along with Paranoia, Pathological behavioural problems, Hallucination's and Delusion are listed as "Uncommon" side effects and not "Rare" side effects as you stated in your posting.
The drug company defines "Uncommon" as up to 10 in 1,000 people compared to "Rare" which they state is 1 in 10,000. However this 10 in 1,000 figure is as you know not reflective of the circa 14% that most independent organisations, such as are very own PDS and the BMC are now stating. Not to mention many leading Neurological consultants within the last couple of years including my own, support the 14% figure. I think there would be a public outcry if 14% of patients who had routine operations died..........!!!
Psychosis (Schizophrenia),along with Paranoia, Pathological behavioural problems, Hallucination's and Delusion are listed as "Uncommon" side effects and not "Rare" side effects as you stated in your posting.
The drug company defines "Uncommon" as up to 10 in 1,000 people compared to "Rare" which they state is 1 in 10,000. However this 10 in 1,000 figure is as you know not reflective of the circa 14% that most independent organisations, such as are very own PDS and the BMC are now stating. Not to mention many leading Neurological consultants within the last couple of years including my own, support the 14% figure. I think there would be a public outcry if 14% of patients who had routine operations died..........!!!
Lets cut to the chase here.
Mirapexin and other agonists cause compulsive / impulsive behaviour including gambling and hypersexuality. That is a definite fact from my personal experience and from the others with pd I've met or chatted with. I had symptoms from the start and Ive seen them in evidence on the forums too.
The problem lies in that it starts so innocuously and then builds upwithout you realising. Dont forget that risk taking and novelty seeking are part of the problem too. So it takes time before it is noticable.
When I started on Mirapexin in 2003 the compulsive gambling issue was coming to the surface. Nothing was said about hypersexuality which is rife amongst agonist takers. 14 to 16% dont make me laugh, more like 99% with the other 1% made up of those who have always subliminated for a lack of sex by throwing themselves into other activities and end up knitting a dozen tea cosies a day or painting the house repeatedly.
If anyone can honestly say they have not been affected by agonists they are taking then I would like to meet them.
The problem is of course the nature of the manifestation of the compulsive behaviour. Hypersexuality and gambling and all that go with them are not topics most like to discuss with partners and friends let alone with GPs and Consultants.
Furthermore there is one overiding factor that stops this happening when you are in deep with these drugs and that is that you get a buzz from them . Thats how dopamine works it affects the reward system so you dont want to stop.
As for legal action. Who is going to put themselves up for a court case that will probably make the TV news and all that entails. If you think Im going to lay myself bare for the delectation of your average Sun reader, think again. My family are too precious to me.
Mirapexin and other agonists cause compulsive / impulsive behaviour including gambling and hypersexuality. That is a definite fact from my personal experience and from the others with pd I've met or chatted with. I had symptoms from the start and Ive seen them in evidence on the forums too.
The problem lies in that it starts so innocuously and then builds upwithout you realising. Dont forget that risk taking and novelty seeking are part of the problem too. So it takes time before it is noticable.
When I started on Mirapexin in 2003 the compulsive gambling issue was coming to the surface. Nothing was said about hypersexuality which is rife amongst agonist takers. 14 to 16% dont make me laugh, more like 99% with the other 1% made up of those who have always subliminated for a lack of sex by throwing themselves into other activities and end up knitting a dozen tea cosies a day or painting the house repeatedly.
If anyone can honestly say they have not been affected by agonists they are taking then I would like to meet them.
The problem is of course the nature of the manifestation of the compulsive behaviour. Hypersexuality and gambling and all that go with them are not topics most like to discuss with partners and friends let alone with GPs and Consultants.
Furthermore there is one overiding factor that stops this happening when you are in deep with these drugs and that is that you get a buzz from them . Thats how dopamine works it affects the reward system so you dont want to stop.
As for legal action. Who is going to put themselves up for a court case that will probably make the TV news and all that entails. If you think Im going to lay myself bare for the delectation of your average Sun reader, think again. My family are too precious to me.
I do not downplay the disastrous effect DA's can have on some people, especially in high doses.I think the high doses are now no longer given.When the numbers of patients on them were still relatively small and with the new ones(Mirapexin and Requip) on the market, the neurologists were hoping that they could push for a bit more than the recommended maximum. I have the impression that the numbers badly affected are not known, I interpret the rare/uncommon/common categories as speculation, not based on hard facts. The shift could be from uncommon to common for all I know. It might be useful if a really large survey was done with input from carers too, as they might be better at spotting the personality changes.
I am affected by Mirapexin too, play too long games on the computer and can be obsessive about finishing my Sudoku, but I find this an acceptable trade-off for the benefits. Not on all forums are there so many and such strong feelings about DA's expressed as on this one.
I am affected by Mirapexin too, play too long games on the computer and can be obsessive about finishing my Sudoku, but I find this an acceptable trade-off for the benefits. Not on all forums are there so many and such strong feelings about DA's expressed as on this one.
The reason this forum is so hot on DAs is because poker, blue eyes and cutiepie have kept it alive.
It gets forgotton too easily because most dont want to face it.
In my opinion if thes drugs are to be used then real care needs to be taken with patients. Proper information needs to be handed out and careful monitoring applied.
Not a simple "have you any increased sexual tendencies" every 12 months.
And you dont need very high levels either 2.7mg can get you started.
It gets forgotton too easily because most dont want to face it.
In my opinion if thes drugs are to be used then real care needs to be taken with patients. Proper information needs to be handed out and careful monitoring applied.
Not a simple "have you any increased sexual tendencies" every 12 months.
And you dont need very high levels either 2.7mg can get you started.
I think Kate you have continued to play down the behavioural side effects of DA's for the last couple of years. Also i believe your comments on this subject are at best naïve and at worst irresponsible. You stated " you have the impression the numbers of people badly affected are not known"? Well maybe you should start by looking on this website because the PDS have referred to around 14% affected by serious side effects on more than one occasion. In fact they state this figure in a information leaflet on compulsive behaviour which you can download from the Advise section of the website. I also very much agree with Leyther the reason only a few bang on about it, is because many others wont discuss it publicly for many reasons. Some of these reasons being, feeling ashamed, want to forget, maybe still in denial or protecting themselves or love ones from getting hurt further.
Personally Kate i think you need to climb out of your box and get in to the real world.
Personally Kate i think you need to climb out of your box and get in to the real world.
Quote:- I interpret the rare/uncommon/common categories as speculation, not based on hard facts.
Kate - My line of thinking has always been that the drug companies don't put any side effects down, whether rare or common, unless they really have to - because they can be detrimental to the popularity of the drugs. Every side effect is listed because it is a hard fact, that has been reported by someone in the medical profession.
Many people wont report side effects either because they don't realise that they are down to the drugs and think the illness is to blame, or they are too embarrassed, ashamed, confused to do so. The very nature of the more serious side effects shrouds the problem with secrecy by the patients.
I think it is important for people to be made aware of the problems being discussed in this posting - knowledge is essential so people can try and seek help before problems escalate.
The Breeze
Kate - My line of thinking has always been that the drug companies don't put any side effects down, whether rare or common, unless they really have to - because they can be detrimental to the popularity of the drugs. Every side effect is listed because it is a hard fact, that has been reported by someone in the medical profession.
Many people wont report side effects either because they don't realise that they are down to the drugs and think the illness is to blame, or they are too embarrassed, ashamed, confused to do so. The very nature of the more serious side effects shrouds the problem with secrecy by the patients.
I think it is important for people to be made aware of the problems being discussed in this posting - knowledge is essential so people can try and seek help before problems escalate.
The Breeze
Mirapexin,
I am confused with this Merapexin.
I was DX in September and started with Merapexin 0.088 three times a day (the lowest dose)
My problem is that the effects of this drug are quite subtle and
I cannot figure out if the PD or the Merapexin are causing my
many and various symptoms.
I now take 6 of these tablets a day which equates to 0.528mg and am finding that my tremor is worse, eyesight blurred, balance is poor as my legs are not well connected to the brain, anxiety and
feeling faint is common and I lack confidence and as a result am becoming retiring if not reclusive.
When I stop taking the Merapexin, I feel better for two days but then mood swings and general feeling of being "unwell" incline me to start back on the pills.
I would like to hear from someone whom has taken Merapexin with success and at what dose and over what length of time it has worked for them.
This PD is not a jolly ride!
Best Wishes,
Arsene
I am confused with this Merapexin.
I was DX in September and started with Merapexin 0.088 three times a day (the lowest dose)
My problem is that the effects of this drug are quite subtle and
I cannot figure out if the PD or the Merapexin are causing my
many and various symptoms.
I now take 6 of these tablets a day which equates to 0.528mg and am finding that my tremor is worse, eyesight blurred, balance is poor as my legs are not well connected to the brain, anxiety and
feeling faint is common and I lack confidence and as a result am becoming retiring if not reclusive.
When I stop taking the Merapexin, I feel better for two days but then mood swings and general feeling of being "unwell" incline me to start back on the pills.
I would like to hear from someone whom has taken Merapexin with success and at what dose and over what length of time it has worked for them.
This PD is not a jolly ride!
Best Wishes,
Arsene
I can give you an example of being fortunate to benefit from Mirapexin, Arsene, I've been on it 18 months and all I noticed were odd days of feeling 'fuzzy headed' in the first few weeks, and it did affect my sleep, but that rectified too after a few weeks. Since then, no side effects.
I got no effect from a total daily dose of 1.0mg. I got effects as soon as I increased this. I chose to increase incrementally, building up muscles and skills as the pills worked so I only went up when I'd notice a deterioration again at each stage. Been on total daly dose of 2.45mg for a year with excellent results and no further deterioration so far.
Kate - listed side effects in the uncommon/rare/v.rare categories mean they DID occur during trials, or have been proven to have occurred since then.
Side effects are not listed as speculation - drug companies are probably loathe to list them anyway so certainly would not list side effects that 'might' occur, only those that HAVE.
I got no effect from a total daily dose of 1.0mg. I got effects as soon as I increased this. I chose to increase incrementally, building up muscles and skills as the pills worked so I only went up when I'd notice a deterioration again at each stage. Been on total daly dose of 2.45mg for a year with excellent results and no further deterioration so far.
Kate - listed side effects in the uncommon/rare/v.rare categories mean they DID occur during trials, or have been proven to have occurred since then.
Side effects are not listed as speculation - drug companies are probably loathe to list them anyway so certainly would not list side effects that 'might' occur, only those that HAVE.