Boann,

This study resulted when the doctor noticed that when she tried to wean patients off an agonist, they exhibited certain symptoms and she decided to investigate. The patients she was taking off of agonists had trouble with impulse control - that's why she stopped the treatment. The study also says that not every patient reacts the same negative way to agonists

In fact, the study postulates about 14-17% of patients suffer from agonist side effects. From the study:


In recent years, there have been increasing concerns about DA side effects, and particularly the fact that they can cause uncontrolled, compulsive behaviors known as impulse control disorders (ICDs). ICDs are reported to occur in about 14 percent to 17 percent of PD patients who use these drugs, and also occur in people who use DAs to treat other medical conditions. In 2006, Dr. Nirenberg published research linking the use of DAs to compulsive eating; others have linked the drugs to behaviors such as compulsive gambling, buying, hypersexuality and Internet addiction. Patients are often unaware of these addictive behaviors, or may not discuss them with physicians because they are in denial, embarrassed by their symptoms, or unaware that they are a medication side effect.

"Impulse control disorders stemming from use of dopamine agonists can be detrimental to a patient's financial, social and physical well-being. Our research identifies another concern -- namely that some patients experience severe, even intolerable, withdrawal syndromes when their dosage is reduced. In this context, it's very important that physicians and their patients use DAs judiciously, and exercise caution when they are tapered," says Dr. Nirenberg.

You must be one of those who is not in the 17%. If you are in the 17%, you will understand why this study is so important to us.

I am similar to you; symptomatic with a tremor I hid for 6 or 7 years, I was finally diagnosed in 1999 at age 41. I took only agonists for the first 6 years; 3 on Mirapex, and 3 on Requip. During that time, I divorced my husband of 19 years (a good thing done compulsively), but also moved 3 times, bought a house and car, spent sleepless hours on the computer, lost my job, lost my health insurance, gave up my car, sold my house, and gambled and mindlessly spent away the proceeds of that house. Sinemet saved me. After I came back to reality, I again began small doses of Requip under the close watch of an excellent physician because it is the only thing that controls certain symptoms.

Agonists are great drugs that can go very wrong in some peoples' brains. You are very lucky; I worry everyday that I was not able to prolong the time before I started on sinemet, but without making the change I just might be dead today because of some sort of reckless behavior or falling asleep at the wheel.

I am 52 years old, 11 years post dx; 17 years symptomatic and progressing slowly (knock on wood), with, my doctor tells me, probably a normal lifespan ahead of me. I do not like the fact the our only options are agonists, levadopa, or dbs. But that's the truth - and it's also the truth that not every PD patient is the same. We all have our personal devils and ways to deal with those devils.

I fail to see why you are extrapolating your experience to everyone else.

I'm a little taken aback by your characterization of my posts is extrapolating my experiences to everyone else. Perhaps it didn't come across, but my post was intended to convey my perspective as my perspective, and was sincere in asking other people for their perspectives. I certainly did not intend to extrapolate my perspective to everyone else, and quite honestly I don't think I did.

The 100% negative press on dopamine agonists is representative of 14 to 17% (To use the numbers from that study) of those who take dopamine agonists. I know that I feel as though I'm in the minority as one who has had a very good experience with a dopamine agonist.

That is part of the reason that I speak up -- so that anyone reading this message board who may be newly diagnosed will see that there is another perspective, which is important in my opinion particularly for young onset who will be much more severely and quickly affected by levodopa side effects if they are frightened out of trying a dopamine agonist first.

And while it is true to some degree that we all react differently to different medications -- I don't think I suggested that wasn't the case -- is more true that virtually everyone ends up on levodopa, and virtually everyone experiences it side effects, eventually.

That is a huge unifying experience. And I don't understand why, given its total inadequacy as a long-term therapy, and given its inevitability in our lives as people with Parkinson's, it seems to be just accepted.

And, if you want to get technical about it, that isn't my experience, I have never taken levodopa.

I am too tired to finish writing this now -- I'll finish by saying again I did not intend to extrapolate my experience to everyone else's -- three quarters of what I said is simply fact. I believe that I prefaced that which was my opinion with this is my opinion.

Boann- I really am truly grateful that you have had a good experience with an agonist -I wouldn't begrudge anyone's improvement or what works for them. You may have been one of those who got properly dosed for these, and that would make a difference. Unfortunately it was prescribed for me shortly after it was put on the market, and I was on an extremely and very inappropriately high dose plus a number of other PD drugs, so I'm sure that was a big factor. But even after the dose was lowered considerably, the ICDs were still an issue - and I never realized just how much they were until I got off 'em - BUT there was also the weight gain of 40 pounds, losing half my hair, plus the fact that it definitely worsened my condition rapidly. I couldn't live with that.

I was diagnosed at age 32, and have been on levodopa at least for 17 years - I have some dyskinesia but I don't think of it as my worst problem by far, and I would much rather deal with the somewhat more predictable effects of the levodopa right now. But you are right, levodopa therapy is also totally addictive, and also neurotoxic, as well as toxic in other ways and we are not told that. And again, any withdrawal symptoms are quickly dismissed as "your true disease becoming unmasked," when I don't think that is the case necessarily at all.

But Boann, can I ask one thing - have you ever kicked a drug that had possibly life-threatening withdrawal symptoms? If not, don't presume that you know anything about it, cuz you really have no idea.

As to the previous discussion about this great researcher, I agree - she not only cared about the patients but somehow wasn't silenced or cowed by the Pharms. And that I think is the main issue about why this hasn't come to the world's attention already, because no pharm businessman ( which includes many doctors) want to acknowledge this issue.

Boann,

I apologize for misinterpreting your position. The statement you made that engendered my reply was this:
"Why are people so upset about the idea that one might experience withdrawal if one goes off a dopamine agonist? "

1. because its hell
2. because the study goes beyond the withdrawal itself and talks about the effects of agonists in general - even titrating down to a lower dose was proving harmful to patients. Makes it hard for a doctor to do their job when even just reducing the dose has so many negative consequences in some patients.

Dr. Nirenberg worked for years to get her story published in a peer reviewed journal - she knows it is the only way to be taken seriously by the medical establishment.

Lots of lessons to be learned here.

It seems to me this information is more news to people without pd. Is it, once again, news to doctors or researchers that we assumed they knew?

just a thought,
paula

Just be clear, I was not attacking anyone for taking levodopa, or for not taking dopamine agonists.

Perhaps it would help if I gave a couple of examples.

First, withdrawal from levodopa can kill you, too. It can cause a life-threatening condition called neuroleptic malignant syndrome. I have never seen it mentioned in a news article, have you?

Second, there is now the same paragraph, word for word, in the sinenet product label as there is in the mirapex product label regarding impulsive behaviors.

This is really quite a bombshell and given the following:

1) There are at least as many people taking levodopa as there are taking dopamine agonists, and probably quite a few more
2) for the past six years levodopa has been consistently and specifically exonerated from any culpability in this sort of behavior
3) rather, in fact, it has been painted as a safe alternative to dangerous dopamine agonists in this context

Given how newsworthy this information was for dopamine agonists, and given that people have been led to believe that they are not vulnerable to these risks if they take levodopa, it seems odd to me that this paragraph was inserted into the product labeling without any publicity whatsoever. As far as I can tell, there wasn’t even a “dear healthcare provider” letter sent out to alert healthcare providers to this change in the Sinemet labeling.

My point is that, *in my opinion,* levodopa’s side effect profile is such that it could easily warrant is much bad press as dopamine agonists are getting – but it gets none.

And either most people with Parkinson’s don’t seem to mind that, or they don’t seem to find levodopa’s side effect profile as unacceptable as I do – that is what I find baffling.

So is not that anyone doesn’t take a dopamine agonist or does take levodopa that confuses me, and I would never criticize anyone for their choices in medication.

Whatever -- I’m sure I’ve said all this before. It has just bubbled up again because I found out about the paragraph in the sinemet label. It seems like just another example of the double standard – what is considered by those who are in positions to raise the alarm worthy of doing so in the case of dopamine agonists is not even worthy of a single news article in the case of levodopa.

I find that baffling, but I guess that's just me.

Regarding my qualifications to have a perspective on drug withdrawal, it seems to me that requiring one to have had personally experienced a phenomenon in order to have a perspective on that phenomenon is setting the bar a little bit high. If you extrapolate that requirement into life in general, things become very complicated.

Anyway, consider my question answered.

I guess someone needs to research and write a paper about the negative effects of Sinemet (which are not disputed by most patients).

This thread was about someone who researched the negative effects of agonists. It has nothing to do with Sinemet. The paper did not pit one drug against the other.

Maybe there's another clinician out there who is willing to step up to the plate.

Boann
"Why are people so upset about the idea that one might experience withdrawal if one goes off a dopamine agonist? There are plenty of drugs from which one would experience withdrawal when one ceases taking them.

If you have to go off the drug, you go through withdrawal, it may be terrible, but it ENDS."

The point is that, as the article under discussion says, for some people it doesn't end, and they can't get off it. And if you're gonna say that going off mirapex is like any other drug that you might suffer a withdrawal pang from, that's just not the case, so yes, I would say you're under-informed. But I'll get over it.

Meanwhile, Carey, I think the issue at the core this thread is DAWS, the syndrome itself, and yes, it's true that they specify one type of medicine, this syndrome does occur also with Sinemet, yes indeedy. And the article's title says "Parkinson's drugs."

And Boann, you are so right, they snuck that stuff right onto the label last year without any public notice or even comment from my doctor...The thing is you can even get neuroleptic malignant syndrome if you regularly eat fava beans and suddenly stop. So to me, once again, the point is that finally someone is talking about the withdrawal from a dependence on agents that specifically raise your dopamine levels from outside your own body, and treating it with the seriousness it deserves.

I don't want to discourage anyone from working out what might be right for them, but in making that decision I think by articulating some caveats we could be helpful. Yes, I was on much more of the stuff than most people would be and I wasn't started with that. That is different, and I fervently hope that the "younger generation" is being treated better. But my awful experience will have been in vain if I don't let people know about it.

Boann, I'm curious - where did you see Sinemet specifically exempted from the same kind of criticism as the agonists or held out as a 'safe' solution? I did get an impression sort of like that, but more unspoken in the air kind of thing rather than clearly stated somewhere. I do think this is relevant to the thread because the issue is the syndrome, its identification, and bringing it to the attention of the scientific community and now the public as well. I've never thought of Sinemet as safe, just a little more predictable. But I never saw written proof of its neurotoxicity before I saw that patent application for mucuna by Dr. Olanow. Then it was all frighteningly clear.

My experience with agonists were appalling.
When I went off them it was abruptly with no ill effects and i was on the highest dose of permax. Do they still prescribe it?
I had visual hallucinations within a week of commencing agonist on a low dose.
The agonist also didn't seem to benefit akinesia or rigidity either (though sinemet gave me a fluidity of movement immediately with just 50 mg.)
In retrospect within no time after starting agonist alone i became an impulsive, boorish, paranoid basically "not very nice to be around" person.
3 yrs after commencing agonist began taking sinemet, whether that increased my obnoxious behaviour I guess we'll never know but I was diagnosed with bipolar disorder.
After a yr of taking medication for my "bipolar disorder" was treated by a new neurologist who abruptly ceased the agonist with no ill effects.
I reduced then ceased the bipolar med soon after as i became more aware of stories related to agonist drugs and realised that it had affected me.
Either that or it was a helluva coincidence that i could now think clearly.
Now I'm back to my old cautious self and feel very strongly that agonist did and can affect anyone and I'm remembered by neuro as the woman who was even told she had bipolar disorder that didn't!!
P.S. Stopping the agonist suddenly wasn't IMO a brilliant idea on neuros part although stopping it there's no doubt in my mind was!
Sorry folks if I've gone off track a bit but just wanted to voice my experience.
Don't post here much anymore as I now have a spinal cord injury which has taken the "I have PD thing" aside a bit.
Lee

Fiona - I believe that the dangers of sinemet are the biggest kept open secret by the PD establishment. As the "gold standard" no one dares tackle it head on; there's only slight warnings around the edge to not overdo, and that it loses its usefulness overtime. They can't attack the only thing they've got going.

I think the inclusion of sinemet in this particular conversation is important, but should not cloud Dr. Nirenberg's achievement. I'd rather give her unqualified congratulations rather than temper them with, well yeah, but what about sinemet? (I honestly don't think she was thinking about or including sinemet; "Parkinson's drugs" can mean some or all; but I am hoping to ask her)

We're a hard crowd to please; we've earned the right to ask the tough questions and receive the truth. But we also should know when to give credit when credit is due.