Could you repeat that?....lol


paula

Chinese proverb.......

"If you see in your wine the reflection of a person not in your range of vision, don't drink it. "

How many languages, literary forms and subcultures does one need to interpret to get somewhere [not sure where ??] around here....ha ha......is the proverb a warning - wrong way;wrong reason??

Artists!!!!

boann-
it seems that you are really trying to puzzle something out, and I relate to the frustration of trying to pursue a line of thinking and people seem unable to understand why it matters so much to you. I really understand the anxiety that all the maddeningly opaque info swirling around us creates, and the doctors ain't much help about clarifying things, nor their minions and suppliers...

I think Carey gave good advice up above...I think if the agonist has been working for you for a while, it prolly will continue to do so. Even though it took four or five years for me taking it before the behaviors spun so frighteningly out of control, at the same time I knew immediately that something was very different about my personality within the first couple of months. I just didn't know it was bad because I seemed happier, and had lots more energy. But then again, I was on a huge dose and many other drugs besides. And even though my doctor told me when she first prescribed it, "you're gonna be cleaning closets on this one" - this was in 1999, so they knew something was up by then - I don't think either of us had any idea how bad it could get for some people.

BUT this may never be you. You would probably know by now if it was likely. Just use our experiences as an occasional checkpoint, but I say trust your gut instincts about what's right for your body. And don't think it is absolutely inevitable you will be taking Sinemet sometime - you may not have to. Even though many will say with a knowing fatalistic quality - "when you eventually have to take Sinemet..." - don't believe it. No one gets to foretell your future for you just because they had a particular experience. You write your own story.

Good luck with it, Boann. I rejoice in your good results and see no reason for them not to continue.

carey asked for my reasons - here they are - fiona, thank you, just saw your post, will read momentarily.

The executive summary is that the studies I have read are demonstrably questionable, which is disturbing to me, even if they somehow have managed to illuminate an actual problem in spite of their flaws. I also think there is need for some balance out there - I cannot be the only person in the world who’s been helped by mirapex, but I sure feel like it.

now comes the blathering.
------------------------------
I find these studies extremely disturbing.

Has anyone reading this post ever read one of the gambling studies?

The 2005 study indisputably and brazenly fails to provide data crucial to supporting the claim that it had found a causal association. One does not need a PhD in neuroscience to see that. That this study was approved, undertaken, submitted for publication, peer reviewed, published, and widely publicized by the Mayo Clinic boggles the mind. Either everyone along the path that study took from inception to being plastered across the Internet was grossly incompetent or they were 100% aware of what they were doing and did it anyway for whatever reasons they might have had.

The 2003 study was a little less brazen, but I would think that a peer reviewer would at least have questioned the presentation of two prevalences and the failure to explicitly comment on their relationship – and I’m not sure who it was who made the quip about statistical significance but when one is talking about numbers that are as close as 1.3 and 1.5 – one needn’t even really do the calculation to be reasonably sure that the difference between the numbers is not significant, even more so if one is a neuroscientist who reviews papers for publication.

One would have had to do a little more work to evaluate the 2006 study, which is really just a letter to the editor, and was not peer-reviewed. I did the work, I obtained the data via the freedom of information act and it shows that crucial information was omitted from that study.

Literally every single study I have read on the subject has holes big enough to drive a Mack truck through. And we are not talking about molecular biology here – one needn’t understand the physiology of the brain to evaluate the validity of these studies.

Call me crazy, but I find that disturbing, and would regardless of the subject matter in the studies.

But there is the subject matter, too -- because we are not talking about a choice between taking a dopamine agonist and taking nothing, we are talking about a choice between taking a dopamine agonist and taking levodopa.

Carey characterized the strongly cautionary perspective on agonists and those who have had bad experiences while on them as marginalized. I disagree.

Folks who have experienced or are experiencing these problems are in the minority in terms of numbers, but given that:

• 100% of the press about DAs for the last six years has been on this subject
• this negative press has been gradually but steadily upping the prevalence and “cause for alarm” antes [ just as an aside, it’s interesting to note that prevalence started at 1.5% in 2003, and the most recent paper effectively puts it at 18.4% -- that’s a big differential – I wonder how Stacy et al missed it in 2003. As another aside, if almost 20% of DA-takers experience this, how can there only be one report that contains both gambling and Mirapex in its first six years on the market?]
• penetration of this idea has been successful enough that neurologists have printed material on display warning people
• people are concerned about taking an agonist before they even try one (which can't *enhance* their experience if they *do* decide to take one, power of suggestion and all - potentially constantly scrutinizing their behavior for signs of compulsions)
• I am the only person I know of putting anything good out there about agonists

It seems to me that the strongly cautionary perspective is the dominant one.

Has anyone seen posters at their doctors office warning people of levodopa's side effects? They certainly aren't what I would call run-of-the-mill. just the other day on this message board I read a post from somebody who said that they had not been told anything about levodopa’s side effects by their doctor but instead had learned everything they knew from people on this messageboard.

And now, not only does levodopa cause fluctuations dyskinesia cognitive problems psychosis etc. but the label says that it can cause compulsive behavior as well. So, wouldn’t you agree that there should be signs up about levodopa at least in terms of causing compulsive behaviors like there are signs up about agonists? The paragraph in the Sinemet label is exactly the same as the paragraph in the mirapex label, after all; not to mention the fact that 95% of the people who are categorized as pathological gamblers as a result of dopamine agonists in the literature were also taking levodopa.

Many of you are concerned about people unwittingly taking agonists and having adverse experiences. That is understandable, considering your own experiences.

I am concerned about people unwittingly taking levodopa either because they afraid to take or are not offered an agonist, particularly young onset, who, the field of Parkinson’s research unanimously agrees, experience the worst of levodopa faster and more severely, and ultimately, longer, then those who are older onset.

Laura, I am sorry, but it is not a myth. The time during which levodopa works without fluctuations or dyskinesia is known as the honeymoon period. I didn’t make that name up – is widely used in Parkinson’s research. One researcher recently gave the post-honeymoon period a name – he called it paradise lost. The length of the honeymoon varies from person to person, but on average the majority of people begin to experience fluctuations, or dyskinesia, or both, by the fifth year on levodopa. a subset of people, young onset, will most likely experience the side effects earlier than that and more severely than later onset. By the 10th year, most people will experience these side effects.

I am not suggesting you should believe me – I am a big proponent of doing one’s own research, finding out for oneself. There are loads of studies available on pubmed and a sizable percentage of them is free.

Maybe those affected were not as embarrassed to come "out of the closet" so to speak, thus the rise in this figure.

Still better than suffering the side effects after one year of starting Mirapex.

I'm sorry boann....I still don't understand. Are you saying that my experience was not real, because I didn't report it before the 2003 study was released? That we should sweep this side effect under the rug......or that we should all stop taking Ldopa and start taking Mirapex.

I suffer with severe dyskinesia and am in the process of being evaluated for DBS. Even with this scary surgery in my future, I would rather face that than what Mirapex did to me.

Patients need to be warned. All patients, including those taking this malevolent drug for RLS, Fibromyalgia and Depression. Maybe that's why the % of those affected is so high. Warn patients and let the chips fall where they may (no pun intended).

Even with all the dire warnings, Mirapex is still widely used and the manufacturer is raking in the profits.

Edited to add: I have recommended Mirapex to some of my RLS friends because I know it works, but I have warned them of the possible side effects. Conscience clear.

Neither of you is wrong, you know. You are both right. This isn't a battle over whether to take mirapex as I see it, but rather the pros and cons.

I can relate to how you both feel. I don't trust research articles anymore. And I do think sinemet can mess you up as badly as mirapaex. i didn't have any problems with mirapex [unless you count computer addiction].

I know how dahlia feels from my experience with aricept. That stuff and others like it will kill a pwp and every day i see nothing that they are researching to dissuade me. It makes me crazy when I read about plans to include pdd patients in the use of these Alzheimers drugs.

I don't think boann is trying to stop anyone from taking anything. she is critiquing the studies and with good reason.....the warning is on the sinemet label too, so everyone's butt is covered. But who knew? I just read mine the other day..there it was. I've read so much about bad pharma driven research to pretty much give up on it and hope for an accidental discovery.

dahlia, understandably, suggests that the low number is due to no one suspecting their meds for their behaviors until they learned about it. Stacy quickly made it "official". I see lawyers and FDA figuring out that mess, not quality medical research.

In the end, we all are just doing the best we can to learn and help others by sharing whatever we've got. That can't be wrong.

Thank you Paula. You are much more diplomatic than I am. I believe the high numbers for 3 reasons.

1. I know many who were suffering with the ICD just from the practice of my MDS.

2. Why would Mayo clinic etal publish these studies except to inform. There is no monetary compensation for them from pharma. If anything, there could be repercussions for revealing these skeletons.

3. Never having been on meds that "alter" the mind, I had no way of knowing that the personality makeover was a result of same. It was slow and insidious. At the time, my definition of side effects was belly aches or head aches.

I just spent 93 minutes on the phone with Dr. Nirenberg. Wow! I have no doubt her statistics are correct; she was completely thorough in her work, and she is passionate about getting the word out to doctors and patients. She described everything about her route to discovery, what happened step by step to lead her to her conclusion - and be able to prove it. She has worked with Parkinson's patients since day one of her medical career; spends 3 and a half days a week in the clinic seeing patients and also teaches.

Let's be clear - not everyone suffers from these kinds of addiction/withdrawal symptoms; agonists don't trigger impulse control problems in everyone. But if you are prone, then agonists are a problem that must be monitored carefully. She has found in some patients that total withdrawal is not an option; they must continue a very small amount of agonist to keep the symptoms at bay without triggering ICD. She believes that a different dopamine system other than the substantia nigra is involved (the limbic system), and that our cells might be dying there as well.

She notices that the highest incidence of DAWS is with people who are tremor dominant and have slow disease progression; she described patient after patient whose lives have been effected just as mine has.

I think that is why we are having a misunderstanding here; we are not wired the same, and our PD is not the same.

I am writing an article about her story - she is one amazing lady!

Never having been on meds that "alter" the mind, I had no way of knowing that the personality makeover was a result of same. It was slow and insidious. At the time, my definition of side effects was belly aches or head aches.

One of the reasons for me describing my experiences with anticholinergics was exactly what blue dahlia defines.

There need to be open and forthright ethical choices that respect our needs as people. If this was honored, the rest would follow. Part of that would be giving us the clearest possible understanding of the dangers of the medication that we are prescribed. ALL of it - and DBS, and clinical trials.

We welcome this study for it's honesty, but can we say, hand on heart, after watching the PD world for the time we have, that every study we read can be taken as read. I think we have to apply a lens of reality to it, that acknowledges that there are agendas to good press, bad press and the many shades between.

I agree with Paula, that neither side is wrong, and that the real argument is about the pros and cons of treatments, BUT we go initially with good faith to be treated, and are not told enough.

The biggest thing we are told that creates patient confusion is that these treatments are GOOD, 'there are good treatments for parkinsons, and you will be alright' - and when we find them wanting we are told that WE have problems... when a % of people say no, I'm not doing good, things are happening to me that I don't understand, things are getting very difficult for me, we are told that it isn't the drugs, we are not believed, and sometimes are told it is in our heads!!

It is that % of people we HAVE to advocate for, EVEN IF THIS IS NOT OUR PERSONAL EXPERIENCE OF THE DRUG IN QUESTION.

I'll say again, it is not about this drug or that drug appearing better or worse, or even studies that may seem to prove or disprove an effect. It is in the actual effect that the drug has on the actual person. The rest is intellectual conjecture. You could bring all the science in the world to me to say that the sky is not blue, that out there in space there is an absence of color - but when I look out of my window, for most of the time I experience the sky as being blue. If I experience a medication for most of the time as giving me something that bluedhalia describes as a 'personality makeover' then not being heard when I describe it takes away something very important.