A message to the drug companies supplying D.A.s


#1
Once again the spectre of DA derived OCDs is rearing it's head. There have been some accusations that the drug companies are up to something to keep the market sweet. Are there any representatives of the companies out there who can answer query about the possible problem with your products.

A scientific discussion is the ONLY way of settling this cause.

We need to see the other side of this discussion.

Chris

#2
Isn't this one of the key issues being considered by Bluey, and to be followed through by the successful applicant?

I'd be amazed (but pleased) to find the drug companies co-operative.

RoS.

#3
The answer to your question Ray is, yes and yes.

spam, good luck in getting pharmaceutical companies to join in your scientific forum debate! Personally I'm going to try the face to face approach, at least that way i know they are for real!

regards
bluey

#4
Which DAs are the ones causing the worst problems? Who makes them? How much money do the companies make from these drugs? Why don't we get the facts right first so we can present them in an intelligent way?

It is very easy to say that these companies will not cooperate but we need to nail it down. Which companies? What drugs?

Let's start a list.

Chris

#5
Well volunteered!

#6
hi spam, i never said the drug companies wont co-operate or particapite in discussions with us! What i said was, i don't believe they are going to do it via this public forum? However if you think this approach has some merits, then feel free to carry on! In the meantime i shall continue with my plans to set up a series of face to face discussions with the major drug companies over the coming weeks. Your more than welcome to join me at these meeting in London?

kind regards
bluey

#7
Ropinirole has now gone generic
this means
a) the good times are over, the profits will plummet - now 60c per pill on the internet
b) every man and his test-tube in eastern europe and the far east will be making generic requip

and I think they made most money out of the restless leg market anyway where doses were too small to cause problems.

In other words GSK don't care anymore and are on to the next new drug.

pramipexole is now 70c per tablet.

there arent big profits to be made in pd at the moment except for azilect.

its prescribers and regulators that are the key not drug companies.

#8
I agree prescribers and regulators are key to any changes.

However the pharmaceutical giants have deep pockets and vast resources therefore to completely ignore them would not make sense.

#9
Hi Spam
I don't really understand why you are finding it so hard to acess scientific information about the side effects of dopamine agonists.
A brief search on Google will bring up the Mayo clinic research Feb 2011. 1 in 4 patients on DAs will suffer OCDs mainly 50% gambling and 50% hypersexuality when taking meds in the therapeutic range rising to 1 in 2 of men under 50.
All das are implicated.
493 doctors reported psychiatric side effects in patients on ropinirole/requip in the Yellow Card system.
Patients' horrific experiences are detailed on this forum in abundance.
Court cases in Canada and Australia against GlaxoSmithKline have been settled out of court for millions of dollars.
All the links have been posted many times on this forum.
Get googling!

#10
i agree. especially regarding compensation.

#11
Hi again, Spam
I hope you have been reading all the statistics reported in the Yellow Card scheme re DAs and OCDs in the "Dopamine Agonists,OCDs and Yellow Card scheme" thread.
Especially Bluey's summary of the reports.
What scientific evidence do you still need? I am sure someone will find a link for you.
GG

#12
GG, thank you for your comments.

For the avoidance of doubt - [u]I am on your side!!![/u]

I am from the medical world and know that medicine changes are ONLY recommended if PROOF is given to the medical professional in a way THEY want it.

Clarity, statistical evidence and documented PROOFS are required.

At present there is a lot of anecdotal evidence, even some documented trials and research floating around. But no one is collating it into a forceful argument.

Face to face meetings with the medical establishment will bring around little.

FACTS FACTS FACTS!!!

#13
.
I'm sure we've been here before.

I seem to recall that the last time a similar suggestion was mooted (i.e. not enough REAL proof to convince the medical profession), the proposer remained in a minority of one, and was unable to convince the rest of us despite professional experience in the subject, and no doubt many an FIBMS, MIBiol, CBiol etc.

The rest of us were happy that there was proof a-plenty. Mountains of it, in fact, all around the globe. The Mayo is probably at the top of that mountain, but there are scores of equally well-respected organisations providing high-quality evidence by the cartload.

Onward!
.

#14
Hi Spam
I am so pleased to hear that you believe that DAs have caused tremendous harm to 1 in 4 users.
I wish you well in your efforts to collate all the supporting info.
Clearly the Canadian law firm which has pursued the drug company and won a huge settlement for victims has done just that but why can they not assist a British law firm to do it here?
Each law firm seems to have to reinvent the wheel..
x

#15
I give up!!

You will not change the status quo as you have no REAL plan for doing so. This will adversely effect the poor people who are suffering from this issue.

I hope I am wrong, for your sakes!

I had nothing to gain from this thread. I was doing it to help, that's all. I suffer from PD as well and I wanted to make things better.

Good luck with your quest.

Chris

#16
Good morning spam, you are wrong in your assumptions.

We do have a plan, in fact I'm presenting it to the OCD Awareness Campaign Steering Group later this morning. Not only is there a very detailed plan but also Parkinson's UK are in the process of appointing a dedicated Campaign officer to drive this campaign forward. Secondly we do have lots of FACTS which support the need for greater awareness and for more openness around potential side effects! For example we will be meeting and formally requesting pharmaceutical companies update the patient information leaflets, reflecting the correct risk ratios around OCD side effects. If they don't agree to do this, then we have lots of compelling factual evidence and will present this evidence to the MHRA (medicines and healthcare regulatory agency), in order to force the changes.

This is just one example of many in respect to our plan. Once i have presented the plan today i intend giving a full update to everyone next week via the website/forum.

spam, if you want to give me the benefit of your experience then I'm more than happy to talk to you and discuss the plan in great detail.

regards
bluey

#17
Good luck today, Bluey!

#18
All the best to you today BLUEY:grin:

#19
Good luck to you all.

I will wait with baited breath for some changes to the prescribing protocols.

Keep everyone informed on your successes please

Chris

#20
http://paulyhart.blogspot.com/2011/03/glaxosmithkline-accused-of-producing.html

A judgement is expected today in the first case in Europe of someone suing GlaxoSmithKline for damage including hypersexuality from Requip/ropinirole.
According to a solicitor I have spoken to this will make a tremendous leap forward for victims if the case is proved.
Does anyone know the verdict??
The man is Didier jambert,article above.
I wait with baited breath....
GG
x