A behavioral study like this is hard to prove and so individualized that you have to find out for yourself. Just don't take it. Your statistics above show how much OCD is occurring in the general population not taking mirapex. So many variables, find out for yourself..
paula

If I knew before what mirapex would do to my life,
I would have never taken one pill -
even sinemet can cause obsessive compulsive issues, but as my psychiatrist
explained to me
dopamine is our feel good chemical, one of our major body produced chemicals
you can get addicted to dopamine even if you do not have PD,
when you take mirapex -we in essence are "high" or called "mania"
say no to drugs, take more B-12, or B-complex w/ vitamin C,
eat better, breathe deeper,
peace to your heart...

I am a bit late to this thread...lost the site address when we cleaned up the pc and reloaded everything. But...for what it`s worth this is my story,.
I am afraid I had OCD before Parkinson`s disease was diagnosed so I cannot account for my Requip being responsible for any further quirks of mine.

Are you ready for the list? And I`m not making light of the situation...but I am sure you will have to smile or at least raise an eyenbrow at some of the things I got up to.Atg the time I didn`t understand what was going on.I hadn`t heard of OCD but looking back I sure as hell was suffering from something or other and it seems as if it was the "said" condition.

1. I had to bathe at least 3 times a day...in antiseptic....have a clean towel each time and a clean set of clothes.
2. Was obsessional about plugs in sockets.Before going out [and this occurred at a time when my life was ridiculously full and active...late teens/early 20`s]
before going out I would have to touch every plug...look at it OUT of the socket and actually say out loud...THAT I HAD REMOVED THE PLUG FROM THE SOCKET....guess how long THAT took !!!!
I was terrified of a fire in the home whilst I was out ...and that my cat would be injured...so I nearly re-homed the cat to try and allay my fears.
3. I had to fold towels with the label at the top right hand corner.Small towels,bath sheets,tea towels...you name it...ALL the same way.

And finally...and this one will make you smile....I had to hang my knickers out on the washing line by the side seam....with all the gussets facing the house.
HOW SAD IS THAT??? WHAT THE HECK IS THIS ABOUT???
If I came inside the house I would know if I had hung a pair out differently and would have to go change it. My washing line was the neatest in England...looked as if I had measured the pegging out distance between garments with a ruler.
These days they are thrown into the tumble dryer and take their chances with the rest of the wash...

As a small child my hair was long and mum used to plait[braid] mine and my twin sisters before school each morning.I would know if the parting down the back of my head was slightly crooked and she would have to begin again.
She must have had the patience of a saint.I wasn`t spoilt...just had to have everything neat and orderly.My mum should have made me go to school looking like an urchin I guess but working class folks were too proud to do that.

But I must add that I was labelled a perfectionist...and liked order to my life....or I couldn`t function and I seriously feel that this sort of gruelling standard I set for myself played a huge part in me arriving at Parkinson`s.

I tend to be more laid back these days...a bit late uh?

So...can`t say that being on Requip has affected me but maybe I consciously try to be the other way now...I must have been an absolute nightmare to be around so am making up for it. lol

You are right of course, some O/C behaviour is a disorder and needs to be treated as such. It's not funny when your the one struggling with it, but we all find ourselves doing irrational things, we know they are not good for our mental health or anyone elses, but still we do them. Something inside us pushes us to the edge of stupidity and we stand there as if we have nowhere else to go. Then we do the "stupid " thing. That much I know because I've done it. When the questionable behaviour becomes a habit or worse, what happens in the true O/C mind. Do they lose contact with reason? Are they driven by fear (rational or irrational). What does the mind say to itself? I just dabble in o/c behaviour (small script).Those who feel they have a problem can enlarge on that and the rest of us will be better informed.

It's not rational behaviour and therefore is not easily explainable. The true test is to stop taking the agonist and see what happens. In my case, as soon as I stopped taking Mirapex, the self-destructive behaviour disappeared, and has not returned (3-1/2 years now).

To add some insight to this, one could say I was a neat freak before PD, which bordered on O/C but interestingly enough, when I was taking Mirapex, neatness and cleaning were the last things on my mind. I was a totally different person on that drug. It changed my personality.

When i was on mirapex - all i could think about was working on the computer - doing photoshop - creating graphics - posters - birthday cards - new designs.

I went to Finland for 2 weeks - was away from the computer - i still throught about doing graphics all the time. I sketched things i would do when i got on the computer again. I looked at european design books.

When i got off mirapex - I got my brain back. I could see my behavior rationally. I enjoy graphics, but I'm not driven any more. i actually failed to create lots of birthday cards.

Unfortunately being O/C did not affect my housekeeping - I'm still lousy at that - either when O/C or not.

Hi Carolyn,

i have been on Mirapex at the max recommended dosage for about 6 years, and i *have* engaged in compulsive behavior during that time - shopping, namely - but the first two studies that were published on gambling (such as they are - these studies are demonstrably baloney), the studies that started this whole furor, cite as their evidence of an association a temporal coincidence between starting/increasing the DA dosage and the onset of behavior and likewise with reduction/cessation of the drug and cessation of the behavior.

The onset of my behavior coincided not with any change to my Mirapex, but to my mother being diagnosed with cancer. I was already depressed at that time, and her struggle put me in a place i had never been before, where the thought of opening my mail or doing the dishes or showering were paralysing - and i found that shopping made me feel better, at least for a little while. the behavior resolved gradually, not with any change to my meds, but rather as i came out of the depression. (my mother is doing ok now)

the only study i have read that looked at DAs and behaviors other than gambling was as flimsy as they come.


my own experience, together with a close read of the three gambling studies, examination of the PIEN and CARE list archives looking for references to this phenomenon that preceded the publication of the first gambling study (there was one, maybe two, before 2003 - far from the epidemic one would have imagined based on the claims of some list participants) and discovering that the folks who did the "FDA" study that mined the Adverse [Drug] Event Recording system database failed to disclose that only *one* of the 39 reports linking Mirapex to gambling came in in the six years between it hitting the market and the publication of the first study in 2003 (there were three linking levodopa and gambling in the same time period - the authors left that out, too) - 38 came in after the publication of that study - all of these things bring me to conclude that this phenomenon has been created, not illuminated. if it had been illuminated, there would have been evidence of it preceding the publicity - there is none.

I haven't done as much reading about OCD as i have about gambling, but i can tell you this - my sense is that there are more studies linking behavior i would characterize as more OCD-like than gambling - they call it "punding" - and levodopa than dopamine agonists.

i would also pose the question that if too much dopamine running around the brain is seen to be responsible for such behavior, why on earth would levodopa, which turns into actual dopamine in the brain, not be as likely to cause these problems as DAs, which only mimic dopamine?

another question i would pose pertains the theory that it is the dopamine rush of the unexpected win that people with PD become addicted to in the case of gambling, because they suffer from a deficit of dopamine and therefore are more susceptible to the rush - but.... wouldn't taking something that replenishes the ambient level of dopamine in the brain *reduce or eliminate* rather than exacerbate that problem?

Finally, I would point out that all of these behaviors are noted as starting with the start or increase of a DA - maybe it is just me, but it seems to me self evident that a worsening of symptoms that requires a the initiation of or an increase in meds is *depressing!* and depression has long been correlated with gambling, and - this is, of course, an extremely unrefined piece of information - over 600 hits if you search on the terms OCD and depression together in PubMed.

I remain unconvinced that DAs are any more likely than levodopa or buproprion (wellbutrin, a dopamine re-uptake inhibitor) to cause such behaviors, and i have yet to see compelling evidence (excludes anecdote) that *any* of them cause such behavior.

my own advice would be to give close examination to the circumstances in one's life that could *also* be responsible for such behavior, and to give serious consideration to the side effects of what one would probably take instead, i.e., levodopa, keeping in mind how long people generally live with this disease (15-20 years) and the length of the typical levodopa "honeymoon period," i.e., 5 years - in addition to whatever your own personal priorities and symptom constellations are, and anything else that is relevant for you - and then make a decision.

or you could always just stop for a bit and see what happens - you can always go back on.

i probably have several studies on compulsive behavior of various kinds and dopaminergic therapy, if you are interested.

my 250,476 cents,
boann

Just a thought about a question you raised Boann, about the difference between dopamine and agonists in relation to OCD type behaviours. I believe, and I may be wrong in this (as I am certainly no scientist), that they hit different receptors - could this be where the difference lies?

I know this is anecdotal, but I personally know someone for whom
Mirapex caused major havoc. Once eliminated from the drug routine all returned to normal. It was only through knowing about this through the online PD community that the problem was recognised and resolved. Without the information on OCD type side effects I doubt that this particular family would have weathered the storm, financially, emotionally, or personally. It affected more than the person taking the drug. While this may only be an anecdote it has happened to enough people for it to be believeable. I do not think that these drugs should be taken off the market, they are too useful for too many, but I do feel that there should be more education about this aspect of side-effects, and more information at the point that a patient is offered the drug, in the interests of making a well-informed choice.

Lindy

Hi lindylanka

I have never read of any theory regarding receptors – only of too much or too little dopamine – so I can’t comment on that.

In my opinion, there are several problems with the idea that it can’t hurt to inform people – what it boils down to is that it is not that simple.

First of all, for a decision to be truly informed, one has to have accurate information. Secondly, the question of whether or not to take a DA does not exist in a vacuum, i.e., it is not a matter of taking a DA or taking nothing – it is a matter or taking a DA or taking something else. Therefore the risks of the options must be compared.

In the case of deciding between a DA and levodopa (and for the purposes of this example, I am just going to compare the alleged risk of gambling to the unequivocal risk of dyskinesias), assuming the 2003 gambling study data was valid, it found a risk that was 0.2% higher among those taking Mirapex than those in the general population, which I believe represents a 15% higher risk (1.5% for Mirapex, 1.3% for general population) – in data collected over a 12 month period.

Compare that to the risk of dyskinesias, on Mirapex vs on levodopa according to a 2004 study by the Parkinson’s Study Group. After four years, the risk of dyskinesias was 25% with Mirapex and 54% with levodopa. Thus the risk of dyskinesias was found to be 116% higher with levodopa, and that doesn’t even take into account that 2/3 of the people taking Mirapex were also taking levodopa (talk about clever trial design.)

They do not provide numbers for the risk of dyskinesias at the one year mark but the graph indicates that the risk is double with levodopa at that point, i.e., 100% higher.

Now, that comparison assumes the 2003 gambling study actually provided sufficient evidence to support its widely publicized claim. Even if it really did find an association, Mirapex’s risk is being distorted by publicity – which effects people’s ability to make a truly informed decision.

But consider the possibility that that study did not actually find an association. What if that study was demonstrably a crock, but no one who was actually going to be impacted by what it claims read it? And what if the second and third studies were also crocks, demonstrably so, but no one read them, and so the headlines went unchallenged?

If that were the case then clearly anyone who opted for levodopa over a DA would be courting a 116% higher risk of dyskinesias within four years than they would have been otherwise (assuming all other side effects are equal for the sake of this point) – and they would be doing it for nothing – they could have bought themselves several more motor complication-free years in the limited time we all have left, but they didn’t, because they had bad information.

And then there is the whole other possibility that neurologists might not even offer people DAs or might discourage them from taking them – because neurologists don’t always read the studies either.

I hope that makes sense – DAs offer the very real possibility of delaying the onset of the very real deficits of levodopa for years – in my case, six years and counting – if people decide to take levodopa instead based on bad information, they could be being cheated out of some very, very precious time.

And the scenario I describe in which the studies are demonstrably crocks but no one reads them - it is the reality here. Expose (as in expos-ay) coming to my blog, soon – the FDA study is already exposed there, if anyone is interested.

Oh and just for the heck of it, I downloaded the data from the Adverse Event Reporting System database for the third quarter of 2006 and tallied the drugs that were cited as primary suspects in cases in which pathological gambling occurred, and in cases in which OCD occurred.

Out of 20 reports involving OCD (most reports include a host of complaints) eight cited Paxil as the primary suspect, which is interesting considering that Paxil is used to *treat* OCD. Two cited Accutane, and the rest were one-offs: Clozaril, Citalopram, Depo-Provera, Effexor, Escitalopram, Lexapro, Lyrica, Mirapex, Tegretol, Zoloft.

Out of four reports involving pathological gambling, no drug was cited twice – Sifrol, Mirapex, Stalevo, Requip.

It is far from an exhaustive scientific analysis, but it doesn’t surprise me that Mirapex shows up as a minor player in the OCD realm, nor does it stand out in the pathological gambling realm. Now Paxil, on the other hand, could be a whole ‘nother ballgame.

Dear boann,
I and others have explained our history to you previously of taking levodopa and the relief of symptoms it's given us so I won't go down that path again.
Dopamine agonists can and do cause problems with atypical behaviour.
I'm glad you don't experience side effects on it but I along with many other PWP I either know or know of have had this happen.
It might present as OCD, gambling addictions or an increased libido.
In my case it was right from the early days of taking an agonist I had visual and auditory hallucinations, paranoia and later hypomania.
After an astute movement disorder specialist found out about my history since starting an agonist it was cancelled.
I had no increase in my levodopa intake after stopping and so query its value in my drug regime.
My behaviour returned to normal (no further hypomanic episodes, hallucinations or accusations.)