Reducing dosage of Parkinson's drugs can cause symptoms similar to those of cocaine withdrawal

http://www.eurekalert.org/pub_releas...-rdo010810.php

take care

Imad

so what is neuroleptic malignant snydrome? - can't recall the exact name.
paula

http://emedicine.medscape.com/article/288482-overview

It's been a year and a half since I totally quit the agonists, and I've been to hell and back. But I would never go back on them.

Fiona, I'm tired of having to learn these things the hard way, thru experience. I don't think anyone knows where we are headed, but you have the floor if you want to tell it. Each experience teaches something very important. And they are life threatening, then you spring back with what you've got left.

sincerely,,,paula

Imad, thanks for sharing this. I have been suspicious of this class of treatment since day one when I tried it and ended up with even morenew ataxia-like symptoms suddenly emerged, that 'poof', disappeared when I stopped the agonist.

As for the withdrawal, I've been there too. Not at all fun, especially when you are pregnant and have no idea what is happening. Instead of feeling overjoyed in expecting, I wanted to crawl under the covers and die. I have since foolishly let two doctors talk me into going back on it and it really is not worth the side effects- I get that weird, harsh wearing off they describe in the article. Thank goodness, someone has named it as such....everything I read, others would say it was disease progression when I knew full well it was the drug- I did just fine on Sinemet monotherapy for 7 months, so why the weird reaction at next dosage for Mirapex that only the agonist will alleviate? I can take a Sinemet and it has no effect, if it were PD alone, that would work. Sad thing I feel pressured to always be "on" and appear normal, so I don't feel like we have much choice. With Sinemet, I feel like it's the devil I know, with the agonists...what longitudinal studies have been done?

Laura

I have always contended that these /compulsive/impulsive behaviors are a part of the advancing disease, but CAN be fueled by some agonists. Nothing has been proven on their association. I was in a 7-day study at NIH on this very thing and the report said the control group was no different.

paula - here's the syndrome you asked about:
http://www.cmdg.org/Movement_/drug/N...t_syndrome.htm

you can literally die from abruptly stopping of PD meds:
(quoting from the link above)
If this syndrome occurs in the setting of Parkinson's disease the treatment is basically the same except the parkinsonian medication should be re-instituted as quickly as possible. Because of the risk of this syndrome drug holidays are no longer routinely recommended for Parkinson's disease.

I say take your meds until they prove it's hurting you!
Peg

peg,

can you check the links in imad's post and mine again?

I m wondering how DAWS and neuroleptic malignant syndrome are different.

It says Daws involves genes but what does that change compare to? after you've read the pronouncement, er......annnouncement....Excuse my behavior, I have ICDs..you'll see the slipping in of new terminology. and shifts in definitions....cough.....next iime i'm gonna have to issue a skim ticket maam.

Well, I spent some years on a very high dosage of Mirapex. I have told this story before, but my behavior completely changed. I started staying up all night doing wacky stuff, lost my job, went into unbelievable debt -my life completely disintegrated to the point where I dislocated my hip and didn't know it, and wound up in the hospital for over a month with pain so acute I couldn't move at all. I am amazed I'm still alive really. And it was worse than I'm telling it, too.

All of these behaviors COMPLETELY went away when I stopped taking the agonists. There is no way they are part of advancing disease, at least from my perspective. But see, that's how they use fear and a patient's self-doubt to corral us into not questioning the treatment. And I agree with you, Laura, I'm trying to keep the meds as simple as I can. Because when the smith hits the fan, and you're struggling with side effects or interactions or withdrawals because let's say you're in the hospital and the nurses don't believe your medication schedule, who is going to be there to help you out then? I spent hours writhing in absolute dystonic agony from enforced medication withdrawal, with a doctor watching the whole time and smirking because she thought I was faking. I was so desparate I got my husband to dial the emergency room in the SAME HOSPITAL I WAS IN to try to get help. When he finally managed to run to the corner drug store and get some Bendaryl in my mouth to at least stop the intense cramping, and my limbs suddenly softened and relaxed, you should have seen the look on that doctor's face when she saw I had been for real.

BUT beware, if one is going to stop the agonists, you have to do it glacially slowly ...very, very, very gradually. And if you can get help, do so. No one helped me. And when the Neupro patch was suddenly found defective and pulled from the American market overnight, was there ANYONE to assist people with that? The company told people to take three days to titrate off it. I'm sure somebody died from that.

BUT Imad, thanks for posting that. I am so happy that the perils of the drug therapy itself are finally starting to be recognized. And for the record, now that I am off agonists, I have probably less off periods and dystonia. And I may be still struggling with the depression, but I was somewhat crazy and irrational while on Mirapex (and this is just me and my description of my own state of mind), and I am not that now.

You present a pretty convincing case; one I have heard repeated almost verbatim. You said:: "All of these behaviors COMPLETELY went away when I stopped taking the agonists. There is no way they are part of advancing disease, at least from my perspective." I suppose the only way of obtaining further evidence that the dopamine agonists (DA'S) are indeed the culprit, would be to have advanced PWP in the control group. I didn't do my homework - has this been done? How else can they determine if advanced PD folks that have been on levadopa (Sinemet) along with the DA's would have these symptoms? But it iidoes seem likely that if your symptoms totally stopped, it must have some correlation.

There's one poster here who has studied this at length. I think I'll get in touch with her and ask for her input. I cannot see that many "long" longitudinal studies have been done.

And the symptoms you mention (increased dystonia) are one or the major reasons that I am not as motivated to drop the agonists. The agonists prevent or help lower my pain level. I know this because I have tried to wean myself from them before, slowly titrating down, as my neurologist suggested.

Additionally, although not a proven fact, agonists have shown some merit of being neuroprotective. Azilect (an MAO-Inhibitor) has also made this claim.

Paula, now I want to address your question as to how this "new" theory or way of assessing Doamine Agonist Withdrawal Syndrome (DAWS), differs from Neuroleptic Malignant Syndrome (NMS). It appears that the symptoms very similar to NMS have been applied to a scale, but it's very similar (although I haven't really dug into it all that much).

Time will tell.

Peggy
Peg

I think this is an incredibly important study with far reaching implications for the care and treatment of PD. It closely matches my experience of living with Parkinson's.

Doctor's who prescribe agonists do not seem to understand the consequences; they require close monitoring, an activity not supported by our current health care system. Agonists are handed out freely; patients are on our own.

Notice that this research was funded by PDF. I've sent an email to Robin to thank him for the funding and asking him, "what now/next?"