Miripex+Sinemet?

[Mountain Woman]

So I went to a new Neuro yesterday, and he had some interesting advice.
First I told him that I thought that I was starting to have some breakthrough symptoms and that I just increased the Miripex 6mo. ago(1mg split 3x daiily) and if it is wise to increase it so soon, and he said it would be fine, that a lot of people increase and it lasts for years. If this increae doesn't last he suggested to add Sinemet, that they are 2 different drugs, and would work together. He suggested that I might start Clonazapam, and I told him that I am already on Halcion, and Xanax. He just laughed. Then he said that if I still have problems he would recomend that I have deep brain stimulation, it has good results for Parkinson's. I haven't read anywhere that it is used for RLS. Wow, that seems drastic. I asked if taking the hydrocodone for any mild daytime problems, and he said sure if I thought it helped. I really don't think he knows jack about treating RLS.
In my last post I asked opions about using marijuana. It was suggested to give it a try, so I got my license, and bought the edible, ate 1/4 of a brownie, and thought or wished I would just die. It was awful, extreme hot flashes,nausea. I couldn't move, and it lasted bad for about 12 hours, and a full 24 before I felt back to normal. The arthritis still hurt, I just couldn't do anything about it.
I just hate that I am taking so many drugs, and now I have been getting peripheral neuropathy pretty bad, and that will be another med. It's depressing.

[Polar Bear]

I hate taking so many medications also, but I'd hate the alternative more.

With regard to the possibility of adding Sinemet, my understanding is that if you would be doing so more than about 3 times per week, that it would not be a good idea as it causes augmentation very very quickly.

Deep brain stimulation may have good results for parkinsons but rls is not parkinsons.

Guy doesn't sound like an expert in rls.

[Neco]

Nobody in their right mind would willingly prescribe Sinemet to a patient when there may be other suitable, viable alternatives.

Especially if that person is already potentially facing augmentation from Requip or Mirapex.

But that is just my personal experience. I have had daily RLS since I was 21 and Sinemet was an absolutely nightmare to be on. I augmented on it so bad it wasn't funny.


If I were you, I would use the Hydrocodone to attempt to mask your breakthrough symptoms, chance are it may work. However if you truly ARE augmenting, you need to eliminate the Mirapex completely, and either try Requip, or talk to your doctor about switching to a stronger opiate to treat both your arthritis (I assume that's what the Hydro is for) and RLS at the same time..

Chances are if you are augmenting, it is going to require more Hydrocodone to control it, than would usually be necesarry, being that Augmentation is an increase in the intensity of symptoms. However if you are concerned about taking so many medications, you may want to discuss with your doctor eliminating the Mirapex and seeing if any opiates listed in the Mayo Clinic Algorithm, might work better for you.

The Mayo algorithm is in my signature. It is in PDF form and you will need Adobe Reader to view it. But it will print out very nicely as well, so you can show it to your doctor.


on the subject of marijuanna. I'm not 100% positive, but I think there is a real difference between to effects of MJ when you ingest it, versus smoke it. My only experience has been with smoking, and just a few hits provided a positive benefit that lasted for several hours.

[sleepdancer]

My experience is with both RLS and PLMD. I have used Sinemet, Neurontin, Mirapex and Requip, and am currently on NO medications for the RLS/PLMD. I have been using a TENS Unit since before Thanksgiving, and my legs are the best they've been in many years. Augmentation was just horrid for me (if you've watched my video you know what I mean) and it would take a lot to get me to ever go back to meds. I do caution anyone going off these meds to do it slowly. I quit Mirapex abruptly from a high dose and developed neurologic issues due to my poor judgement. Actually, stepping it down gave me a little more time of it doing okay for me. But after maybe 3 weeks of getting things figured out with the TENS Unit, I use it every night so I can sleep, and so far haven't needed to use it during the day for the RLS. Don't know if it would work for anyone else, just know I was desperate for some relief and and to whatever degree and for however long that relief lasts, I am grateful.

[SquirmingSusan]

Mountain Woman, if your neuro is willing to prescribe the hydrocodone, that might be enough to control your RLS on its own, without taking the Mirapex. Opioids work for most people, but sometimes hydrocodone isn't strong enough. And with marijuana, stick to smoking it. You can adjust the dose much easier that way. Once you eat a brownie, you're committed for a while.

We were discussing the possibility that deep brain stimulation might be found effective for RLS in the future, but no one had any idea that it had been tried or was even being studied.

[Kimberly]

We were discussing the possibility that deep brain stimulation might be found effective for RLS in the future, but no one had any idea that it had been tried or was even being studied.

I've been looking into it as well. Have found some good/some bad on it. In fact, this 'bad' report was from back in 2004, but maybe things have changed?


"Emergence of restless legs syndrome during subthalamic stimulation for Parkinson disease

1. S. Kedia, BA,
2. E. Moro, MD, PhD,
3. M. Tagliati, MD,
4. A. E. Lang, MD and
5. R. Kumar, MD

+ Author Affiliations

1.
From the University of Colorado Health Sciences Center (S. Kedia), Denver, and Colorado Neurological Institute (Dr. Kumar), Englewood, CO, and Beth Israel Medical Center (Dr. Tagliati), New York, NY, and Movement Disorders Center (Drs. Moro and Lang), University Health Network, Toronto, Ontario, Canada.

1. Address correspondence and reprint requests to Dr. R. Kumar, Colorado Neurological Institute, 1443 S. St. Paul St., Denver, CO 80201; e-mail: rajeev_kumar@msn.com

Abstract

The authors systematically studied the emergence of restless legs syndrome (RLS) after subthalamic nucleus (STN) deep brain stimulation (DBS) for Parkinson disease (PD). Postoperatively, 11 of 195 patients with STN DBS reported new problematic symptoms of RLS. The mean reduction in antiparkinsonian medication was 74%. The mean RLS score at diagnosis was 15 (±5.9) of a possible 24 points and after symptomatic drug therapy 4.3 (±3.1) points. Reduction of antiparkinsonian medication during STN DBS may unmask symptoms of RLS and complicate therapy of both RLS and PD.

* Received April 14, 2004.
* Accepted August 2, 2004."

http://www.neurology.org/content/63/12/2410.abstract

[Mountain Woman]

You are so right Susan about eating the Brownie, it was really, really horrible for at least 12 hrs., then just bad for another 12. I am a smoker, but to smoke MJ, it smells very destinctive, so I am not to sure about that.
I have enough Hydrocodone to take enough, but that would be an awful lot, and every 3-4 hrs, then I would be dependent on that. I am not going back to that neuro, no one is touching my disfunctional brain without threat of eminent death!
Your vid of RLS Dancer was truly horrible, it reminded me how lucky I am to have the control I have.

[cornelia]

Here's recent info on deep brain stimulation:

Parkinsonism Relat Disord. 2011 Jan 7. [Epub ahead of print]

Effects of STN DBS for Parkinson's disease on restless legs syndrome and other sleep-related measures.
Chahine LM, Ahmed A, Sun Z.

Cleveland Clinic, Cleveland, OH, USA.

Abstract
Restless legs syndrome (RLS) and other sleep abnormalities are common in Parkinson's Disease (PD). We prospectively examined sleep measures in PD patients undergoing subthalamic nucleus (STN) deep brain stimulation (DBS). An RLS questionnaire, Epworth Sleepiness Scale (ESS), and Parkinson's Disease Sleep Scale (PDSS) were administered through telephone interviews preoperatively and postoperatively. Seventeen patients were included. Mean preoperative and 4 weeks postoperative ESS scores were 11.6 and 6.4 respectively (p < 0.001) and PDSS scores were 94.2 and 122.9 respectively (p < 0.001). The improvement was sustained at 6 months. Six patients were diagnosed with RLS preoperatively. Mean preoperative International Restless Legs Syndrome Study Group rating scale score was 23.0. Mean 4 week and 6 month postoperative IRLSSG rating scale scores were 14.8 and 13.8 respectively, significantly improved compared to preoperative scores (p = 0.027 and p = 0.037 respectively). No patients developed new-onset RLS postoperatively. STN DBS improves daytime sleepiness, sleep quality, and RLS.

Copyright © 2010 Elsevier Ltd. All rights reserved.
PMID: 21216651 [PubMed - as supplied by publisher]

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