Parkinson's Disease Tulip


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Old 01-25-2007, 03:24 PM #31
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Default interesting stuff!

Some of you have mentioned behaviours that I have, but have not looked at them in the light of OC before. For example, I draw and do colored pencil work...my work has become very detailed and that has occurred since I started mirapex. I find it interesting that I can be so captivated by the veins on a leaf (observing myself). Where did this subtle change in "me" come from. You have certainly made me think with all your comments. I totally relate to the post that talks about keeping your house etc. neat and tidy before PD and now being totally unconcerned. I have noticed when I am "off" I become quite distressed about the disorder around me and make lists of what I MUST do as soon as my meds kick in....then they kick in and I go do something else, ignoring the list as if it were made by some other person (my mother maybe) but she's not around to make me do it!!! I'm stranger than I think I am
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Old 01-26-2007, 01:18 PM #32
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Default mirapex

i was taking mirapex about 1 year i got to where i was on my computer. i would say iam done on it and before i new it i was right back on it i quit meripex and requip i dont have any complulsive behaver. as soon as i quit it stoped.donna
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Old 01-27-2007, 12:22 AM #33
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Quote:
Originally Posted by boann View Post
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

Well the most damning evidence, for me at least, was when CNN (Paula Zahn) did a segment on Mirapex and the connection with compulsive gambling. The doctors (of the manufacturer B.I.) very non-chalantly said "Yes, we know it's the drug that's causing this". Case Closed!

http://www.kintera.org/site/pp.asp?c...BKlF&b=1293531

Boehringer Ingelheim makes the most prescribed agonist, Mirapex. The company told us in a statement that two years ago it started warning in its package inserts about reports of compulsive gambling and that it is working with Parkinson's experts to "investigate the relationship, if any, between Parkinson's drugs and compulsive behavior." __The company suggested we call two of those experts. Drs. Matthew Stern and Daniel Weintraub at the University of Pennsylvania. Surprisingly, both doctors told us there is no question the drugs are behind the compulsive behavior.


In addition, since being diagnosed with breast cancer on top of all my PD woes, and going through treatment for same, one can say I'm a wee bit depressed.......but I somehow don't have the urge to gamble. Interesting, isn't it.

Last edited by bluedahlia; 01-27-2007 at 12:37 AM.
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Old 01-27-2007, 08:26 AM #34
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Default Dear blue Dahlia,

I am so sorry, no wonder you feel depressed, having one serious illness is already one too many.
About agonists, the Doctors you mentioned, at University of Pennsylvania, are conducting the survey in which I participated this past December. The survey is sponsored by the drug companies that produce Mirapex and Requip. They are pairing up patients who experience obsessive behaviour for a long term study. Obviously they are still taking the problem very seriously.
I wish you strength and courage and thorough mending from the illness that is mendable. I hope all the very best for you.

birte
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Old 01-27-2007, 11:40 AM #35
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Quote:
Originally Posted by BEMM View Post
I am so sorry, no wonder you feel depressed, having one serious illness is already one too many.
About agonists, the Doctors you mentioned, at University of Pennsylvania, are conducting the survey in which I participated this past December. The survey is sponsored by the drug companies that produce Mirapex and Requip. They are pairing up patients who experience obsessive behaviour for a long term study. Obviously they are still taking the problem very seriously.
I wish you strength and courage and thorough mending from the illness that is mendable. I hope all the very best for you.

birte
Thank you so much!! The last 7 years have not been kind to me, but as the saying goes, what doesn't kill me (and hopefully it won't) will make me stronger. Soon, I will be able to leap tall buildings in a single bound........Look, up in the sky..... Sorry, got carried away there. hehehehehehe!

The breast cancer is gone and with the hormone treatment I am currently on, should not return. We can only do so much. The rest is in God's hands.

I can't emphasize enough about some of the dangers of Mirapex. I don't want anyone to have to suffer the way I did.

Thanks again.

Last edited by bluedahlia; 01-27-2007 at 11:47 AM.
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Old 02-19-2007, 02:16 PM #36
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my mom developed an organizing and cleaning compulsion on mirapex, and now seems to have the same trouble with Azilect. 8-12 hours a day organizing drawers, putting things in baggies, rubber bands around everything. I'm wondering if agonists in general do this to her.
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Old 02-19-2007, 03:20 PM #37
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I was on Requip for 2 months and not even close to the therapeutic dosage. Taking it made me feel like I was on a medium to mild psychodelic drug. I never wrote poetry, but on Requip it just came out. Like in the previous post about the veins in the leaves, I had the same experience to anything visual.
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Old 02-21-2007, 02:01 PM #38
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Carolyn,

I think the OCD problem varies from person to person. I have been on Mirapex since 1997, Starting with 0.375 mg 3 X per day, gradually increasing to the maximum of 1.5 mg 3 X per day in 2005. From that point I have stayed at the same dose until now.

Although, OCD and hallucinations are listed as side effects, I haven't experienced any. The closest I have come is maybe more vivid dreams.

I can tell you that without the Mirapex, I could not function.

Have a nice day!

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Old 02-21-2007, 02:35 PM #39
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Hi, at a slight tangent here, I'm on my 6th week of Mirapexin (as we call it here in Blighty), maximum dose for last 2 weeks and the daytime drowsiness doesn't get any better, compounded by night-time insomnia (which obviously makes the next day's drowsiness a lot worse). In addition, it's definitely affected my mental state, and not in a good way. I feel jittery and anxious and depressed and generally "weird", for want of a better term (which is odd as this drug is supposed to be an anti-depressant). On the plus side, it certainly improves some of the physical symptoms. However, I'm seeing the PD Nurse next week and will either ask to change meds or get something for the anxiety/depression. Not that I want to be popping dozens of pills. Anyone else had a similar experience?
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Old 02-21-2007, 07:26 PM #40
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Welcome to NeuroTalk Bob...

Goodness, I never thought this thread would go on for so long, but nice to see it has.

Bob, I have noted that my anxiety has increased to a point of needing medication for it from time to time, but never considered that Mirapex might be a culprit

Salvador, I am sure you are quite right, everyone will have a different reaction to meds.

I was to have seen my MovementNeurologist last Thursday, but here in the PA we were iced in with 4 to 12 inches of ices everywhere. So, I had to move my appt to March. I will mention the anxiety to her, in addition to the OCD issues.

At least I am not gambling my car away...
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