Dopamine agonists,OCDs andyellow card scheme


#1
I have been reading about the Yellow Card scheme for reporting side effects of drugs to a government body which can investigate and take action.
I had assumed that the consultant and GP involved with my husbands dreadful hypersexuality and related destructive life would have filled in such a card.
But I am not sure so I have filled one in online. Very straightforward.If anyone else wants to do so, it might make someone take notice if there is a deluge of reports.
Here's the link:

http://yellowcard.mhra.gov.uk/

At the end you can tell your story so I gave all the details!
Doubt they will believe it!
X

#2
I have been reading the rports on the yellow card site.
I note that Cabergoline was withdrawn having 103 cardiac side effects and 102 psychiatric effects.
Ropinirole and Requip XL ,its later formulation ,has 493 reported psychiatric side effects.
And that's what's been reported to this public body.
Can we convince them it's only the tip of a very ugly ice-berg?
X

#3
Great find, GG, well done!

Bloody good idea, that. I hope every affected PwP will take part.

RoS.

.

#4
Well done GG for finding this info, it will come in useful in our discussions with the drug companies and industry regulators.

Having just spent the last 2 hours looking through the reports, the situation is even worse than you think? Take the Ropinirole/requib yellow cards, you quite rightly said there are a total of 483 yellow cards under psychiatric disorders. Of the 483 psychiatric disorders cards, 95 of them are just for pathological gambling, hyper sexuality and other serious OCD issues. However i found another 46 OCD yellow cards under other headings such as; Economic and social problems, bankruptcy, criminal acts and gender cross dressing,to name but a few!

When you add it all up, there have been at least 141 yellow cards relating to serious OCD side effects. This more than any other listed yellow card side effect by a mile. Yet the manufacturer state on the website and info leaflet, the OCD side effect risk is very uncommon (less than 1 in 1,000). By contrast only 10 yellow cards have ever been recorded for nausea, vomiting and retching! Yet they clasify this side effect as being very common! I also checked cabergoline and mirapexin and if anything they worse with even more yellow cards for OCD issues, including several suicide attempts and 2 deaths.

This yellow card information proves the drug companies are currently just playing lip service and that the OCD side effects info on the drug information leaflets is mis-leading to put it mildly.

great work GG, this will come in handy.

bluey

#5
Hi Bluey
Your research is very thorough and must have taken you ages. I am amazed at the detail of your findings and the true horror of what they reveal. Yet no action seems to have been taken...
The drug companies must be made to rewrite the leaflets to reflect what they really know about these drugs and patients need to be told.
How can they get away with these lies for that is what they really are.
Thank you for your willingness to plough through these reports and more power to your elbow in the fight against these powerful companies.
Love GG

#6
.
They get away with it by using brilliant delaying and stonewalling tactics, very expensive international lawyers, bottomless coffers and enormous blinkers.

Plus of course plenty of skulduggery, subterfuge and behind-the-scenes manoeuvring which we'll never get to see.
.

#7
Hi all, great stuff GG and Bluey. I've just registered with the site mentioned but not sure how to find the reports that you mention. Any advice would be welcome, I am a bit of a thicko when it comes to the pc?

Glenchass

#8
Hi Glenchass
I am useless on the computer and just do a lot of clicking until I get somewhere!
To find the reports I...
-got on to yellow card home page via google
-Clicked sitemap at the side
-then further info
-then yellow card data
-then scrolled down to drug analysis prints
-then down to alphabet at bottom
-then to ropinirole/requip
Hope that helps but still don't know how Blueeyes found the extra categories!
Hope you filled the form in...and that they are deluged with side effects and have to act!
X

#9
To find the extra data you need to scrawl through every Reaction sub heading. looking at each yellow card entry, it can take you hours! But then for someone like me who loves detail this is my poetry!

If you look at cabergoline for example, under "Social Circumstances" you will see a side effects yellow card adverse reaction recorded as "economic problems?" In other words this poor individual probably run out of money due to gambling or paying for hookers while taking cabergoline! Filing the report under social circumstances nicely sweeps the real cause of the problem under the carpet.

bluey

#10
So I should be re-categorised as "Suicidal Tendencies", then?

:laughing:

#11
way to go GG.
thanks.

#12

Just looking through old posts to see if anything has been added.
It hasn’t.
The Yellow Card Scheme has done nothing to change the situation…these highly dangerous drugs are still prescribed.
Have the drug companies changed the warnings in light of the Yellow Cards reports or the 2010 Mayo Clinic research that revealed that 1 in 3 patients on Ropinirole/ Requip suffer catastrophic impulse control/ Obsessive Compulsive disorders…is this side effect described as uncommon , fewer than 1 in 1,000 ,still?
Has PDUK had any contact with the companies that sell these life-destroying meds?
If these drugs blinded patients there would be a massive campaign to ban them.
But it is only gambling and hypersexuality…and patients still stumble onto this forum with ruined lives and no idea what has happened to them.
GG


#13

Glaxo, who make Requip, list all these potential problems on their patient information sheet in each pack of tablets. The impulsive behaviour, hypersexualty and such are all listed, with the recommendation that if any of these symptoms appear, you should go to your doctor for a change in medication. It is first on the list of potential side effects, as of last year. They even suggest motoring patients for signs of such side effects.

Any generic forms of the same drug will be required to have the same information on the info sheets included with the drug.

So there is no ‘conspiracy ‘ in the drug industry, nor is there any need to ban their prescription. The risks are printed in black and white for everyone to see, and the majority of people benefit from the medication. Would you want to remove that benefit from patients?

I should add, that any doctor prescribing dopamine agonists should make these potential side effects clear to patients and their partners or carers.


#14

I should add, this also now applies to the other dopamine agonists such as cabergoline on their patient information leaflets.


#15

Thank you for the update, Island Mike.
Are you saying that the warning is now under very common side effects?
That is a big step forward.
The 1 in 3 Mayo Clinic finding was for patients on a " therapeutic dose".
The years of putting it under uncommon side effects , 1 in 1,000, were misleading to say the least, in light of the evidence.
So many lives wrecked for profit.
The secrecy, lies and self-denial which the medication brought about contributed to carers not realising until it was too late, if in fact they were warned.
Hopefully the problem is much less now.

GG


#16

I have just checked the latest Requip leaflet.
I find that the impulse control disorders appear under the very uncommon side effects category…less than 1 in 10,000
I am not sure which leaflet you looked at.
I am very concerned at this inaccurate and dangerous warning.
Could you post a link to the leaflet you are referring to?

This is the latest one I can find…

GG


#17

It isn’t so much listed as a side effect, it’s more of a product warning before you even reach the side effect list, so it’s just about the first thing on the patient information leaflet. I think the drug companies have been taken by surprise by the frequency of these side effects, but it is to their credit they have responded appropriately. At last.

There’s not much more the drug companies can do, but I know for sure that some people (like me) just toss the leaflet aside because it’s easier to stuff the tablet sheets back in the box!


#18

But the fact remains…it is factually incorrect to say it is a very uncommon side effect affecting 1 in 10,000!
I wish PDUK would take action to correct this,
Stilll newbies stumble into the forum with wrecked lives…
GG


#19

The link appears to be for a generic version of Ropinirole that hasn’t been updated. I looked at the latest Requip xl patient information leaflet, and the latest cabergoline leaflet.


This is all very new, so I quite agree with your comment about ruined lives. This would be sufficient for what they call a class action in the US against the drug companies, I do think they were slow to react.

November 2017 is the date of the updated information sheet. How long have we known?


#20

There are many articles about the influence of DAs on impulse control disorders.Just Google it.
The first warnings came in 2005, the avalanche of research findings started in 2010.
Legal suits were successful in the following years mainly the USA and France.
Many millions of dollars were awarded.
No legal firm in the U.K. would take on the Big Pharma giants.
Today the warnings in leaflets are still lies about the extent of the problem.
Many lives are ruined…including mine and my husband’s.

2005…
https://www.cbsnews.com/news/sex-shopping-addiction-lawsuits-may-force-faster-drug-safety-updates/
GG