If it's just an excuse why does it get mentioned on the list of side affects on the leaflet that comes with the medicine?

Hi,
I think it is important for people like pennyB to share their experiences and warn others about the possible side effects.Having been taking Mirapexin for the last 6 weeks,and reading through advice like pennyB's,i feel i am fully briefed and on the lookout for any unwanted changes.This is from a person who does like to bet(within means)and would certainly not want to jeopardise 24 years of marriage.Thanks again pennyB,your advice is valuable to many using this forum.
All the best
Titan

Thankyou to everyone for your kind responses to my post. I really appreciate your understanding. I don't want to scaremonger about DAs; I know many people benefit from them but it is vital that everyone - both medics and patients and family - knows that they may cause extreme changes in behaviour and even even personality. I also appreciate those who have sprung to my defence faced with Big M's claim that blaming DAs for my 'cheating' on my husband is outrageous. Believe me, that's nothing to the beating up I constantly give myself.
Penny

Hi Penny

Im sorry if i caused you upset i didnt mean to. All i was doing was voicing my honest opinions. I have researched the DAs and their side effectsw, even before i started to take mine. All i was saying was it seemed that you were blaming the side effects of your DA on your playing away. You never said whether yours was aa happy marraige before your diagnosis even in your posting you say although your husband got angry from time toi time he seemed to underrstand what you were going through. Even after you cheated it was you that initiated the divorce procedings not him. So surely you can understaand my synisisms. No offence was meant just an observation.

Mark

hi, can anyone tell me what other medication is available without going on dopamine agonists ? see the specialist soon and has see him every few months, would like to ask about would like not just given(if you know what mean)
please help ?

i think the figure of 14% of people on DAs having impulse control disorder may be very misleading. the figure comes from a study called DOMINION which is based on questionaires on gambling etc
1) 7% of people not on DAs also came out as having ICD so DA itself could only cause 7% maximum
2) i can't be sure but i believe people were counted as positive even if they showed minor tendencies towards excess, eg being told by their partner that they spend to much on gambling
in other words, the 14% may not mean that one in seven people get into terrible trouble with compulsive behaviour, only that they show signs of ICD.
on most of the studies of people taking requip, for example, very little compulsive disorder problems were seen.
my worry is that a lot of people could be scared of drugs that are actually the best for them at the stage they are at. i think neurologists care about the drug's effects on their patients and if 1 in 7 patients went bankrupt etc they would not be prescribing them.

I’m pretty upset that my husband wasn’t told about DA side effects so that when things started to go wrong (not compulsive behaviour, other stuff) we had no idea that it was because of the DAs, and it took an age to work it out because he was taking several other things at the same time.

Knowing about the risks up front wouldn’t have put him off trying the drugs because, as Turnip says, lots of people have no problems with them at all. But it’s so important to know the potential side effects so you know what to watch out for. For us, it sure would have been nice not to have to go half-way to hell and back out of sheer ignorance.

Janine, I believe the alternative to DAs is to go on to actual L-dopa, so it’s definitely worth considering the DAs. Forewarned, that is.

All the best,
Marie

hi everyone,
have now took the first leap into the unknown. start mirapexin in 2 weeks time .
parkinson nurse phoned and told me eventually there is no way out of take da,s ,so in light of that i thought would take the plunge!! let you know how i get on over the few weeks when posting

Hi all.

We've just been having a discussion about dopamine agonist side effects in the "in defence of mirapexin" thread which probably belongs in THIS thread. If anyone here hasn't been following the former you may find it interesting.

If you also Google "laura marsh patrick callahan parkinson's" you'll find an interesting paper on DA side effects from a Parkinson's Disease Foundation publication.

Big M, your assertion that infidelity can't be caused by DAs is completely out of kilter with all the latest research. DAs can quickly hook a patient into a huge range of obsessions (sometimes several at once), even if the patient was never interested in such pastimes before. This is because DAs affect not only movement control but also the brain's risk-and-reward system.

Common obsessions caused by DAs include punding, gambling, excessive spending & shopping, hypersexuality (increased libido), cross-dressing, reckless generosity and delusions of grandeur.

Thousands of innocent PD sufferers have had their lives destroyed by DAs, and hundreds are taking out civil actions. Many millions of pounds have ALREADY been awarded to victims.

Ray.

Hi again.

Janine:

Although there are several minor groups of PD drugs, the medication tends to fall into one of the two major categories: Levodopa-based (the traditional "solution") or Dopamine Agonists.

Since the effects of L-Dopa are believed to wear off over time, thus requiring larger and larger doses (with the associated increase in side effects), the experts nowadays prefer - if possible - to start the patient on DAs. They can then save the L-Dopa until later. This approach is particularly preferred for young-onset patients (dx before age 60).

Turnip:

The figure of 15% (1 in 7) of PD patients who are given DAs suffering from OCDs did not come from just one study, it came from hundreds of studies and papers over several years, and numerous conferences and symposia worldwide.

The internationally accepted norm is now is that 1 in 7 PD patients given DAs will suffer OCDs to some degree. This could range from a bit of punding, or a few extra lottery tickets each week, to total destruction, as we've heard here.

It is also accepted by the experts that in addition to the above 1 in 7 there must be an unknown number of PD patients on DAs who never report their condition, either due to shame, not realising the altered behaviour is connected to their PD or its medication, or the desire to STAY on the DA because they enjoy the excitement and pleasures it brings.

Ray.