I know that Mirapex has been linked to headlines such as this: Prescription For an Obsession? Gambling, Sex Manias Called Surprise Risks Of Parkinson's Drugs. I've even read about OCD shopping as a result.

But, has anyone seen any other OCD behavior discussed, or has anyone developed an OCD since PD dx.

I have developed a compulsion that has been come clinically bad, forcing me to seek a therapist to hopefully resolve. I am trying to find a reason for it, but I have not been able to find any literature on the Web about OCD other that what I cited in the first paragraph above. I see my MD doc next month and will bring this up, but in the meantime...

Help Please!!

carolyn,

i can say that my dad has gotten and ocd after his dx with pd, over his meds. he HAS to take each pill at exactly the right time. plans his day around taking pills.

i also see a pattern in what he has to do in daily life. very ritualistic.

i'm not really being much help. but you aren't alone. my dad has such a bad time with requip, he is afraid of adding any meds.

Hi Carolyn,

OCD - I know the stories and I can't seem to control an increasingly greater part of just - my life; I think that the agonists are getting a bad rap. Eventually, to me, it alll gets meshed together and who cares ...lol. I mean if you are doing a Howard Hughes you should probably be concernd. I know some serious OCD friends who don't have PD.

One of my closest friends can't let toes touch each other while watching tv at the end of the day......I look at her with my best stroke face and we just laugh. She gets therapy. Individual as anything else is my guess.

Paula

Carolyn..There are some folks in my support group that had to get off Mirapex for that reason..mostly gambling

For me it was eating. A hundred pounds' worth.

Jaye

I am just thinking here--what if OCD can be a component of Parkinson's, and agonists increase the expression of it???? sort of like "unmasking" the disease that is potentially there, but gets expressed only with a nudge---? madelyn

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.)