just found this

posting it as i do think we need to be aware of it, but i dont get any of these side effects, just gained a little wieght, abc.net.au/pm/content/2013/...

[Hidden]

thank you Tallula, interesting

[eileen49]

that's terrible for those families - I didn't realise the drugs were that bad

[cicek]

Thanks for sharing that info. All the side effects are clearly listed on the patient info leaflet in the UK and most of us hopefully won't suffer from any of them (fingers crossed). I feel very sad for all the families involved. As most of us know, when you suffer RLS there are times I think we would swallow anything to get some relief. I can't speak for other countries but this syndrome really needs to be taken a lot more seriously in the UK before we too see news reports like this one.

[Pete-1 in reply to cicek]

I had to sign a form stating that the risks of these drugs had been explained to me by an NHS medic so that the the NHS would not get caught up in such legal going's on.

[cicek in reply to Pete-1]

Not heard of this. The medication I am taking is not yet recommended for RLS in the slow release form (got it by default in Turkey). My doc agreed to continue with it as it was a big help but I didn't have to sign anything. Think she got a little "slap on the wrist" because as yet there is no generic form of it. The enclosed leaflet listed all the side effects but I didn't have to sign anything.

[Hidden in reply to cicek]

neither did i, but i think Pete-1, is on a lot stronger dose than us as he has PD

[Pete-1]

What I heard years ago was that some of these, I think mostly Dopamine agonist drugs, could result in some dodgy behaviour but only if large doses are being taken. So I am suprised that those with RLS may be effected as treating RLS only requires very low doses. I take Pramipexole for PD so I take a relatively high dose (was 3,06mg per day before taking the prolonged release version). On this site I have read of people only taking 0.088mg (or was it 0.0088mg?) to treat RLS. My dose was up to the maxmum allowed and the only strange behaviour I indulged in was the same as before I ever took Pramipexole.

[Hidden in reply to Pete-1]

my dose is 1.05 mirapexin ER, i gained a little weight, but thats all, i do have a feeling though, that some people, not all, will exagereate if the see money going, jumping on the band wagon, I feel that if you take a drug, you should read up on it very well before you even start on it

[Hidden in reply to Hidden]

Sure, another consideration Tallula.. =)

[Patsy11011 in reply to Hidden]

Maybe you should walk a mile (or 10 years) in my shoes!!!!!!!!!!!!!!!! You have no idea, even the Drs didn't know in Australia until about 2005

[Hidden in reply to Patsy11011]

I respect your answer Patsy 11011. I've heard

the stories and I sure agree that there are quite a

few who fell victim to the side effects. I wish that

you were not one of them. No one deserves to

find out the hard way.

I started the drug in 2011. By then, the chemist was

able to read off the top of his head the negative side

effects. My heart goes out to anyone that lost anything

because of the medication. = / Thanks for your

point of view Patsy.

[cicek in reply to Pete-1]

I take Requip XL at maximum dose of 4mg - not noticed any change in behaviour but then I've always been a bit strange!!!!

[Hidden in reply to cicek]

ha ha well said Cicek, we have to be strange to cope with RLS i think

[Hidden in reply to Pete-1]

Pete-1. My heart goes out to anyone that lost anything because

of the side effects of that drug but on the other hand, I do take the

drug and it's been bringing me a fair amount of relief. It's helped

so many people who never did get side effects... so I sure hope

that Dopamine stays until a newer drug comes out that actually

works well.

[Hidden in reply to Hidden]

Yikes, dont worry, they will not be taking any dopamine med off the market as far as i know, It helps too many people. The good of it outweighs the bad side effects. There are many of us who wouldnt have a life without out dopamine meds. I take it and have never had the gambling, shopping addiction. As has been said already, any med you take, ALWAYS read the leaflet for what side effects COULD happen.

[Hidden in reply to Hidden]

totally agree Ellise

[Hidden in reply to Hidden]

same here Yikes, i may get shot down for this, but if we all read the leaflets and make ourselves aware of what MAY happen, then it's our choice as to wether we take the meds or not. We are responsible for our own choices, and i do think the blame culture goes to far these day's, yes it does cause side effect's for some of us, but it' was your decision to take them, you have a choice not to, chemo cause's lot's of side effect's also, so where do you draw the line. If we want research for new med's we surely wont get it if we sue the companies that make the meds, my arthritis pill was stopped by my doctor as it's linked to stroke's, now i struggle with daily pain that no pain meds will ease, i would have that med back at the drop of a hat, i can't wash my hair myself, or fasten my zip's and button's, cost a furtune to see a chiropodist just to cut my toenail's, and the price of shoe's i now have to buy is disgracefully high, so for me i make my choice to take the med's, to be free from the RLS, and i would take the arthritis pill to be free from constant crippling pain.

[Hidden in reply to Hidden]

Actually my ears are wide open on this forum. =)

I'm just glad that so many warnings are on the drugs

now. It's horrible that those affected by gambling,

sexual activity were fueling their compulsiveness

without knowing why. = /

Taliula, I'm upset that you had such an unfortunate

event happen to you. I'm sure that a stoke is very

costly as well as the emotional and physical

aspects. It puts a large lump in the throat to think

that you had this happen to you.

[Hidden in reply to Hidden]

Yikes, it was a mini stroke, im ok as far as that goes, my worse problem is arthritis, seems to be spreading all over my body now, and really stops me doing everyday things, but i try not to let it get me down, others are worse of than me

[Hidden in reply to Hidden]

Without the RA drugs, I am like the tin man without his oil can. (I'm not even kidding) The change of seasons always brings flares on for many in my group. Some describe it as flu aches and pains..severe fatigue. Some fall asleep on the toilet - it's a struggle to get from bed to the bathroom.. I've sure heard enough of it as of late. I hate to think that you are feeling a bit like they do.

Trying to be everything for everyone in your close personal life can make you feel like you are pulling a train along with you everywhere you go. Let some of those things go..and you have to be number 1 this time. <3

[Hidden in reply to Hidden]

Bit difficult for me, as i live with my cousin, and shes ill also, so we have to help each other, maybe one day i feel better than she does, or vice versa, but when we are both ill its a bad day for both of us

[Hidden in reply to Hidden]

Lucky that you have each-other to comfort. Take turns doing back rubs. My sister and I used to do that.

[Hidden in reply to Hidden]

Soft music can lift pain away.. some people in my group are listening to Enya.. it doesn't always work but a very relaxed body gets pain relief than an energized mind, uptight body.

[Hidden in reply to Hidden]

yes, thats the good part Yikes, but as for music, totally different tastes, she likes all the old soul music, i dont

[Hidden in reply to Hidden]

The trouble is, not everyone reads the leaflet for what side effects could happen. or they dont take heed when things start to go wrong. Read the leaflet, ask a family member or a close friend, to keep an eye on you for strange things that might be out of the ordinary for you. Just because your doctor prescribes your med for you, you HAVE to also be your own doctor for a better word on keeping yourself safe and healthy.

[Hidden in reply to Hidden]

exactly what i think, you have to be responsible for yourself, all the time

[Patsy11011 in reply to Hidden]

That's the trouble Elisse this was not written in the PDS until about 8 yrs ago

[Hidden in reply to Patsy11011]

Exactly, what you and Elisse just said is so important.

[Patsy11011 in reply to Pete-1]

with permax the highest dose I took was 8mg and cabaser it was 6mg. The only meds that worked and I can't take them

[Hidden in reply to Patsy11011]

Patsy- How are you surviving the nights of rls? Did the doctor

ever prescribe for you a pain killer?

[Patsy11011 in reply to Hidden]

I am now on Fentanyl patches plus .5mg sifrol (strangely sifrol does not affect me even though it is a dopamine agonist) aropax for the anxiety the patches cause and Clonazepam for the strange verbal dreams I know have due to one of these medications! None of them work as well as Cabaser, it was all I had to take and very rarely had any trouble. I have trouble nearly every early evening with the R.L.S and now for some reason I have extreme pain every night in bed in my right leg. There is no answer

[Pete-1 in reply to Patsy11011]

Taken from wikipedia:-

Pergolide (trade name Permax) is an ergoline-based dopamine receptor agonist used in some countries for the treatment of Parkinson's disease.

Parkinson's disease is associated with low levels of the neurotransmitter dopamine in the brain. Pergolide has some of the same effects as dopamine in the body.

In 2007, pergolide was withdrawn from the U.S. market for human use, after several published studies revealed a link between the drug and increased rates of valvular heart disease.[

[Hidden in reply to Pete-1]

Pete-1, yes what you have posted is correct,. that medication was withdrawn for the reasons given

[Hidden in reply to Pete-1]

Thank you Pete-1. You beat me to looking up why

it was withdrawn. That just figures that the drug

would work so well and then be pulled from the

market...reminds me of Phen Fen - that weight

loss drug that worked in months for my very over-

weight friend.. being thin changed her life for the

good in more than one way. She had some life

threatening diseases because she was so overweight

and the diseases just fell away once she was even

thinner than her goal weight... the FDA pulled the

drug and she returned to a state of devastation...

diabetes returned and so did her oxygen tank..

she gained the weight back and then some. For

her, she'd rather take her chances with the drug than

live in the state that she is. She is 49 yrs old.

[Pete-1 in reply to Hidden]

Hello Yikes,

This is a good example of how your own sub-conscious mind can (eventually) kill you.

Smoking is another god example. When a smoker stops they generally feel really disgruntled about having to police and discipline themselves and feel generally awful and bad tempered. So what does the sub-conscious do. Well the sub-conscious is "designed" to protect the body from immediate danger. It doesn't really consider time and as an example of this consider a dream in which memories from any period in your life may be re-called and become part of the now of your dream. The sub-conscious has the solution to your current woes as your whole body screams for the dopamine hit from tobacco, it says "hey I know what will make you feel good again, normal and able to cope. Yes that's it have a fag and everything will be just fine" And with the conscious mind being comparatively weak out comes the packet that you held in reserve and off you go once more feeling that normality has been restored for the good of all.

Anyway, I hope your friend finds a way to combat her problem with food.

[Rubylane25]

Same thing in United states was settled for 8.2 million and now myself and approximately 200 other canadians are in a lawsuit in Canada. We are hoping to reach a settlement by the end of 2013! Those side affects are absoutlely real as I experienced them myself and lost thousdands and thousands of dollars andhad never in mylife been a gambler. It is devastating to those who experience and does destroy famlies!

[Hidden in reply to Rubylane25]

I agree it does destroy families, but so can the effects of RLS, as i found out not to long ago

[cicek in reply to Hidden]

I agree with you Tallula. RLS at it's worst can destroy the whole family. I am fortunate and have no children at home now but my husband and I have really had to change our lives because of it.

[Hidden in reply to Hidden]

Tallula....... = /

Hugs. <3

[Rubylane25]

I absolutely agree. Although the drug affected me in the OCD way such as gambling I was fortunate to have my oldest son completely take over my finances and he just puts spending money in the bank for me. I tried not being on the drug and it nearly drove me crazy. So I take it still, have my son control my finances and find other compulsive habits that are more healthy. Sometimes you just have to take a medication no matter what the outcome!

[nightdancer]

Even on a low dose you can develop these side effects. I know 3 people who lots their homes and everything because they developed terrible gambling and compulsive shopping habits that they never had before the drug. This has been going on for years, especially the class action suits. I ha done woman who was living in her car because of taking a pretty low dose of Pramipexole/Mirapex,she developed a very compulsive personality. Lost her home, her husband, and much much more. The possibility of these side effects that we have talked about here before is very real, and is listed in ALL the Mirapex information, either on line, or in the leaflet you get with your med at the drug store. So, it is something to watch out for, and your family should be aware in case you start developing these behaviors so it can be stopped as soon as possible. The class action lawsuits have been going on in the US and other countries since 2005 or before. It does happen, but, of course not to most people. It is one of those things that CAN happen and it can happen at any dose, just so you know. Like Tallula says, read up on a drug and ask questions before you take it, and then be aware of what might happen. Rubylane, I hope you get your settlement this year. From what I have read about the Canadian one, you should have it done soon. Good luck!

[Patsy11011]

Hi Guys, That is me in the interview with Caroline Winters, I have been interviewed a few times on T.V. and also in a National magazine Women's Weekly, so they wanted to follow up the result of the Class Action.