these people do not know how serious the consequences these drugs have on pwp lives and families.i totally agree with blueeyes47 .i was also one of many pwp who was suffering from the effects of da,s .
Hi all ,i have just read the sun article and read the comments that where left below im shocked these people do not know how serious the consequences these drugs have on pwp lives and families.i totally agree with blueeyes47 .i was also one of many pwp who was suffering from the effects of da,s .
these people do not know how serious the consequences these drugs have on pwp lives and families.i totally agree with blueeyes47 .i was also one of many pwp who was suffering from the effects of da,s .
hi Renee
i dont think anyone has made this point recently (its getting hard to navigate or search after 28 pages) but to answer your question, i think the only reason people get DAs to start with is that Ldopa is linked to dyskinesia. this especially true for younger people. DAs hopefully delay the onset for a few years. I think Kate would argue that this link is questionable, in which case going onto Ldopa would be the first choice.
i dont think anyone has made this point recently (its getting hard to navigate or search after 28 pages) but to answer your question, i think the only reason people get DAs to start with is that Ldopa is linked to dyskinesia. this especially true for younger people. DAs hopefully delay the onset for a few years. I think Kate would argue that this link is questionable, in which case going onto Ldopa would be the first choice.
That's what brings me down Janine. I've been involved with DAs for 10 years, and still we face such moronic attitides and ignorance.
http://www.thesun.co.uk/sol/homepage/news/3250877/Drug-made-me-put-on-dress-and-bet.html
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http://www.thesun.co.uk/sol/homepage/news/3250877/Drug-made-me-put-on-dress-and-bet.html
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I am grateful for the Sun article. It is accessible not buried in some academic tome. In fact today I received a 'phone call from a friend of some 30 years standing who had read the article & was concerned on my behalf.
There will always be people who mock what they consider bizzare behaviour, but I feel that is their problem
There will always be people who mock what they consider bizzare behaviour, but I feel that is their problem
To be fair, most of the people who leave comments on the Sun's site make moronic comments about everything. They are equal opportunity d***heads.
eg on madonna
U R A SAD WRINKLED OLD HAG......WHAT A FINE MOTHER.....WHERE R YOUR KIDS....
etc
eg on madonna
U R A SAD WRINKLED OLD HAG......WHAT A FINE MOTHER.....WHERE R YOUR KIDS....
etc
I welcome the latest attempts to publicise the side effects of DAs and hope more people will recognise that the drugs are bringing about their destructive behaviour and come off them.
But has anyone info about the withdrawal problems of coming off them?
I have found many internet articles about this, likening them to coming off cocaine, but no info on how to manage the self-pity, agressive outbursts, paranoia, depression etc. or how long it lasts.
My husband is tapering the drugs ( now down from 36mg a day to 12 mgs) and we are struggling to cope. This is very hard alongside dealing with the growing knowledge of his behaviour over the last few years which threatens our 46 year marriage.
But has anyone info about the withdrawal problems of coming off them?
I have found many internet articles about this, likening them to coming off cocaine, but no info on how to manage the self-pity, agressive outbursts, paranoia, depression etc. or how long it lasts.
My husband is tapering the drugs ( now down from 36mg a day to 12 mgs) and we are struggling to cope. This is very hard alongside dealing with the growing knowledge of his behaviour over the last few years which threatens our 46 year marriage.
hi goldengirl,
Yes it can be comparable to coming off Cocaine!
Yet again this is another area of inconsistency between Neurologists. Some will take you off slowly over a few months, others in weeks and some even take the patient straight off DA's. If you looked up what is the best way of coming of Cocaine addition or any other Class A drug and without 24/7 supervision, then i think you will find its slowly, if you want to avoid withdrawal impact. Judging by the list of issues you state your husband is experiencing, i would suggest you need to contact your GP and discuss it asap.
Believe me things will get better, however your husbands journey back to the man you once knew, can be made easier if his withdrawal from DA's is managed correctly.
Yes it can be comparable to coming off Cocaine!
Yet again this is another area of inconsistency between Neurologists. Some will take you off slowly over a few months, others in weeks and some even take the patient straight off DA's. If you looked up what is the best way of coming of Cocaine addition or any other Class A drug and without 24/7 supervision, then i think you will find its slowly, if you want to avoid withdrawal impact. Judging by the list of issues you state your husband is experiencing, i would suggest you need to contact your GP and discuss it asap.
Believe me things will get better, however your husbands journey back to the man you once knew, can be made easier if his withdrawal from DA's is managed correctly.
Sorry goldengirl i forgot to say; Paranoia, aggressive outbursts, self pity and depression are classic symptoms of Cocaine withdrawal. The symptoms can be aggravated if the withdrawal is done to quickly. Given the high DA dosage your husband was on, i would suggest total withdrawal could take several months if you want to minimise the symptoms you mentioned.
I was taken off the DA's straight away and beleieve me it wasnt a pretty sight. It took a good few weeks before I could even remotley rejoin society and of course I couldnt work for months. Worth it in the end though.
Glenchass
Glenchass
.
Hi.
I came off the DAs mor or less immediately, but had to go through hallucinations, depression and severe paranoia for a week or two. But eventually this was worth it and it was the correct method FOR ME.
Others can take gruelling months though, everyone is different.
Keep going Golden Girl. As Margaret Thatcher used to say, THERE IS NO ALTERNATIVE (TINA). You MUST get him 100% off DAs as quickly as possible, even if the so-called specialists tell you otherwise. Do NOT stop when you get your o/h down to just a few mg because "he seems ok now". He WON'T be, trust me.
And NEVER forget, because it wouldn't be fair on either of you, that however awful his actions were/still are, IT WASN'T/ISN'T HIM, it's the drugs talking, arguing, lashing out and trying to manipulate everyone, NOT HIM. The REAL o/h from long ago is still in there trying to get out.
Of course you will still carry on wondering about what he got up to whilst "under the influence", that's only normal - I'd be amazed if you didn't. My own wife still regularly hurts when thinking about what I got up to with other women, for example. Her educated mind knows the DAs were controlling me, but at a physical and emotional level there are bound to be doubts, scars and nightmares.
She still asks for gory details, and these memories will be there forever. Care and understanding will always need to be there, but the outcome CAN be an even stronger relationship in the end.
Ray.
.
Hi.
I came off the DAs mor or less immediately, but had to go through hallucinations, depression and severe paranoia for a week or two. But eventually this was worth it and it was the correct method FOR ME.
Others can take gruelling months though, everyone is different.
Keep going Golden Girl. As Margaret Thatcher used to say, THERE IS NO ALTERNATIVE (TINA). You MUST get him 100% off DAs as quickly as possible, even if the so-called specialists tell you otherwise. Do NOT stop when you get your o/h down to just a few mg because "he seems ok now". He WON'T be, trust me.
And NEVER forget, because it wouldn't be fair on either of you, that however awful his actions were/still are, IT WASN'T/ISN'T HIM, it's the drugs talking, arguing, lashing out and trying to manipulate everyone, NOT HIM. The REAL o/h from long ago is still in there trying to get out.
Of course you will still carry on wondering about what he got up to whilst "under the influence", that's only normal - I'd be amazed if you didn't. My own wife still regularly hurts when thinking about what I got up to with other women, for example. Her educated mind knows the DAs were controlling me, but at a physical and emotional level there are bound to be doubts, scars and nightmares.
She still asks for gory details, and these memories will be there forever. Care and understanding will always need to be there, but the outcome CAN be an even stronger relationship in the end.
Ray.
.
Thank you blueeyes 47,glenchass and ray
As always you give so much info, advice and support.
What happens to people who don't find this forum and have to go through this alone.
You have given us hope that we will reach a new life.
Love
goldengirl
As always you give so much info, advice and support.
What happens to people who don't find this forum and have to go through this alone.
You have given us hope that we will reach a new life.
Love
goldengirl
Here is a Question for you Pub Quiz fans;
How many people in the UK have suffered form a Psychiatric problem at some point in their life? The definition of Psychiatric problem is; Mild to serious Depression, mild to serious personality disorders, mild to serious Obsessive Compulsive Disorders, etc.
The answer is 1 in 4 people in the UK, according to the NHS.
This figure seems to ring a bell..........
Ahhhhhhhh i know why it rings a bell! Its not far off the 1 in 5 figure being quoted as being people experienced serious side effects from DA's!
Maybe one day the Nurological medical profession might catch on there is a link !!!!!!!!!
How many people in the UK have suffered form a Psychiatric problem at some point in their life? The definition of Psychiatric problem is; Mild to serious Depression, mild to serious personality disorders, mild to serious Obsessive Compulsive Disorders, etc.
The answer is 1 in 4 people in the UK, according to the NHS.
This figure seems to ring a bell..........
Ahhhhhhhh i know why it rings a bell! Its not far off the 1 in 5 figure being quoted as being people experienced serious side effects from DA's!
Maybe one day the Nurological medical profession might catch on there is a link !!!!!!!!!
Doubt it!
Hi everybody
I was just looking at the Patient Information Leaflet by Eli Lilly for the Dopamine Agonist 'Pergolide' (leaflet approved August 2010). It says:
"Side effects that have been seen rarely: (less than 1 in 1000)"
" As with other Dopamine Agonists,pathological
gambling,hypersexuality, and increased sex drive in
patients receiving pergolide therapy"
No that's not a typing error, it does say 1 in 1000 (0.1%) !!
Jonathan
I was just looking at the Patient Information Leaflet by Eli Lilly for the Dopamine Agonist 'Pergolide' (leaflet approved August 2010). It says:
"Side effects that have been seen rarely: (less than 1 in 1000)"
" As with other Dopamine Agonists,pathological
gambling,hypersexuality, and increased sex drive in
patients receiving pergolide therapy"
No that's not a typing error, it does say 1 in 1000 (0.1%) !!
Jonathan
hi companypleasant, this is what i keep banging on about!
There is no co-ordination on this DA issue between the drug companies, the medical profession, the NHS, and organization like NICE and PUK. According to the PUK website 14 in 100 are affected and also independent research involving over 3,000 pwp puts it at 14 in 100. Yet the drug companies are saying on patient info leaflets its 1 in 1,000. The NHS and NICE websites have it at anywhere between 1 in 100 and 1 in 1,000 depending which type of DA you look at. As far as the Doctors are concerned there attitude goes from one extreme to the other. At one end of the scale we hear stories of Doctors saying the side effects are nothing to do with DA's. Yet others wont give DA's to new patients without going through some form of risk assessment and involving the patients next of kin.
To be frank i think this whole DA side effect issue is nothing short of a scandal, and its about time an organisation like PUK started being more proactive and sorting out this MESS..........
My post will now more than likely be deleted for telling the truth
There is no co-ordination on this DA issue between the drug companies, the medical profession, the NHS, and organization like NICE and PUK. According to the PUK website 14 in 100 are affected and also independent research involving over 3,000 pwp puts it at 14 in 100. Yet the drug companies are saying on patient info leaflets its 1 in 1,000. The NHS and NICE websites have it at anywhere between 1 in 100 and 1 in 1,000 depending which type of DA you look at. As far as the Doctors are concerned there attitude goes from one extreme to the other. At one end of the scale we hear stories of Doctors saying the side effects are nothing to do with DA's. Yet others wont give DA's to new patients without going through some form of risk assessment and involving the patients next of kin.
To be frank i think this whole DA side effect issue is nothing short of a scandal, and its about time an organisation like PUK started being more proactive and sorting out this MESS..........
My post will now more than likely be deleted for telling the truth
What I'm about to say just about sums up this sad and sorry mess regarding DA side effects.
If you follow the links on this website via Treatments and then click on Dopamine Agonists you will find the following information on each type of DA, taken from the drug company info leaflet.
Mirapexin......... effects 1 in 100
Requip............ effects 1 in 1,000
Cabaser........... Number of people effected not known.
PUK Information leaflet........ 14 in 100 effected
Doctor Voom's Independent research.........13.8 in 100 effected
So there you are a range going from, "Don't know" to 0.1%, upto 14%.....
If you follow the links on this website via Treatments and then click on Dopamine Agonists you will find the following information on each type of DA, taken from the drug company info leaflet.
Mirapexin......... effects 1 in 100
Requip............ effects 1 in 1,000
Cabaser........... Number of people effected not known.
PUK Information leaflet........ 14 in 100 effected
Doctor Voom's Independent research.........13.8 in 100 effected
So there you are a range going from, "Don't know" to 0.1%, upto 14%.....
The US journal Archives of Neurology : 17.1%.
.
Cabaser / Dostinex ( i.e. Cabergoline ) claim "less than 1%". Ha ha!
.
Cabaser / Dostinex ( i.e. Cabergoline ) claim "less than 1%". Ha ha!
.
I know a number of people on DAs have had expert evidence given in legal situations where the patient has found him/herself in trouble with the law, and been found not guilty because of the damage done to them by the drugs, but has anyone in the UK taken the manufacturers to court because of the inadequate warnings and monitoring?
Is any legal firm building up a class action where costs can be shared because my husband ,and the other people affected I assume ,has lost/ given away most of his funds and cannot afford to sue alone.
Is any legal firm building up a class action where costs can be shared because my husband ,and the other people affected I assume ,has lost/ given away most of his funds and cannot afford to sue alone.
Hi ray, blueyes, and goldengirl, take a look at this from the Mayo Clinic. He says they found nearly 1 in 5 and it probably exceeds this proportion, and that was nearly 7 years ago.
J.
J.