Restless Legs Syndrome (RLS) Discussion Board

And, some nice photos

http://www.sleepreviewmag.com/2015/02/a ... f=cl-title

Some excellent quotes:

Buchfuhrer says, “If you’re going to use short-acting dopamine agonists in RLS patients, then as soon as you start seeing a patient having trouble, be very cautious with dose increases. If a patient on a short-acting dopamine agonist drug gets worse, it’s augmentation until I can prove otherwise.” -

The risk of augmentation increases as the short-acting dopamine agonist dose increases, but Buchfuhrer has seen augmentation occur even with low doses. This leads him to think there may be better first-line therapies altogether. -

Most physicians, even specialists such as neurologists and sleep specialists, markedly underuse opioids in situations in which they are necessary and in which alternative therapy either does not exist or is not as effective,” Buchfuhrer says. -

Buchfuhrer says, “I have lots of patients who have been on opioids for 20-plus years and who are doing extremely well with zero problems. Their lives are RLS free.”

Another option is prescribing previously “failed” drugs at lower doses together. In a paper published in Neurotherapeutics, Buchfuhrer says, “Often, adding failed medications at lower doses together may circumvent the emergence of side effects and their combination may provide effective relief when any of the drugs alone has not been helpful.”

And, what may be my favorite:
Buchfuhrer says, “We tend to see patients who have seen the sleep specialists or neurologists in their local communities. Most of our patients have seen a few or more. By the time we’re done, over 95% of those difficult patients are doing extremely well with respect to their RLS….Most anyone can do this with time, effort, and experience. But you have to be willing to use many different medications (which are often off-label), sometimes in combination, and you have to understand when augmentation is occurring and not get your patients on high doses of short-acting dopamine agonists.”

Thanks for posting this. I hope other doctors are learning from Dr. B how to spot and treat augmentation. Nothing pleases me more than to think someone might escape what I and others here have endured.

sleepdancer2 wrote:Thanks for posting this. I hope other doctors are learning from Dr. B how to spot and treat augmentation. Nothing pleases me more than to think someone might escape what I and others here have endured.

Honestly, that is the biggest reason I started posting here. It took me months to put it all together and over a year to get the help I needed - lost work/career, lost relationships, lost time with family and friends....loss after loss after loss. And it all could have been prevented.

lost work/career, lost relationships, lost time with family and friends....loss after loss after loss. And it all could have been prevented.

Yup. It's both sad and motivating. Such overwhelming amounts of totally unnecessary grief.

badnights wrote:

lost work/career, lost relationships, lost time with family and friends....loss after loss after loss. And it all could have been prevented.

Yup. It's both sad and motivating. Such overwhelming amounts of totally unnecessary grief.

A secular amen to that!

I printed out a copy of the interview for my GP to whom I'd already given the Clinical Management book. I'm lucky he has an open an interested mind. It's a shame there are so many inflexible doctors out there. (Q. What do you call the person who graduates at the bottom of his/her med school class? A. Doctor)

I also am going to give a copy of this to my GP.

I have been off pramipexole for about 17 days, having used the 2 mg Neupro patch and
225 mg of Lyrica. I am still experiencing considerable symptoms which to me are
either the residual effects of the augmented pramipexole, or the effects of the patch
which also has augmented and which I continue to use along with Lyrica.
I find myself wondering if the severity of the symptoms I continue to experience reflects
the severity of the underlying disease. If I were to get off the patch, is there a chance
that the symptoms of the underlying disease would be considerably less than what I
am currently experiencing? If so, Lyrica might work as monotherapy.
The good news is that I continue to be symptom-free during the day.

Orrel wrote:I have been off pramipexole for about 17 days, having used the 2 mg Neupro patch and
225 mg of Lyrica. I am still experiencing considerable symptoms which to me are
either the residual effects of the augmented pramipexole, or the effects of the patch
which also has augmented and which I continue to use along with Lyrica.
I find myself wondering if the severity of the symptoms I continue to experience reflects
the severity of the underlying disease. If I were to get off the patch, is there a chance
that the symptoms of the underlying disease would be considerably less than what I
am currently experiencing? If so, Lyrica might work as monotherapy.
The good news is that I continue to be symptom-free during the day.

It is a possibility. How likely, I do not know. But, pregabalin does work for some as monotherapy, so it's worth a try.

Is Dr Buchfuhrer the person who does the Medical Reply on the Southern California RLS Support Group, Patient Letters website? Whomever it is, that person prefers methadone to oxycodone as the opiode to use to come off of DA's. That methadone has a longer half life and one dose should last the night is appealing to me. I am getting convinced that this is what I will be requesting my sleep doctor to prescribe when I see him in June. However, the German research article that describes the effectiveness of oxycodone plus naloxone has me wanting to know what Dr. Buchfuhrer and other top RLS specialists think of this research. I have ordered the Clinical Management of RLS book and perhaps it will be covered in that book. Any others here care to discuss the German research?

Aipulu wrote:Is Dr Buchfuhrer the person who does the Medical Reply on the Southern California RLS Support Group, Patient Letters website? Whomever it is, that person prefers methadone to oxycodone as the opiode to use to come off of DA's. That methadone has a longer half life and one dose should last the night is appealing to me. I am getting convinced that this is what I will be requesting my sleep doctor to prescribe when I see him in June. However, the German research article that describes the effectiveness of oxycodone plus naloxone has me wanting to know what Dr. Buchfuhrer and other top RLS specialists think of this research. I have ordered the Clinical Management of RLS book and perhaps it will be covered in that book. Any others here care to discuss the German research?

Yes, one an the same. Since he is a co-author of the book, the book does cover using methadone and why they prefer it.

The German research is an anomaly. It's about the ONLY research on any opioids. That's because most are available inexpensively and no one is going to pay for the research. You can't compare it to methadone in one way because there is no research to back it up (well, limited). Many docs wouldn't care - they'd only go with the drug that the was researched.

The main difference, as I understand it, is primarily half life. They all work very similarly to stop the sensations and urge to move. Though, some of us find some work better than others (so that is part of the selection process, too). And, there is sustained release oxycodone, too.

I have tried oxymorphone, oxycodone, methadone, and levorphanol. I did not try the extended release versions. So, from my perspective, only methadone allows me to sleep through the night - as long as it's not right before my period or during other times when the symptoms are temporarily worse, I do not wake up with symptoms. That is pretty phenomenal. For me, all the others allowed me to sleep about 3 hours. I would wake up, take my next dose, and wait awhile for it to work, then would get back to sleep for about 3 more hours. I didn't like that much in comparison. For some odd reason, all the others also caused me to get very tense - I would clench my jaw/teeth and was a bit testy (or a lot).

If you write to Dr B on the So Cal site (somno@verizon.net), you can ask him for his medical opinion about the study. he will most likely answer you.

Question regarding methadone vs other meds - If one has limb movements during sleep, which meds best stop the movements? Years ago a doctor told me pain meds wouldn't stop the movements but rather, would help me sleep through them. Anyone knowledgeable about this?

sleepdancer2 wrote:Question regarding methadone vs other meds - If one has limb movements during sleep, which meds best stop the movements? Years ago a doctor told me pain meds wouldn't stop the movements but rather, would help me sleep through them. Anyone knowledgeable about this?

I can only share my experience. I had much worse PLMs than WED initially. Augmentation changed that and now both are very bad. I definitely find that the DAs work best on the PLMs -and I think that is supported by the research. BUT, the opioids do decrease them - I honestly cannot remember what the research says (there isn't much research on PLMs in general). I don't know how much. My husband says I still move some, but nothing like I did before meds. Maybe 10-20% remains? Just guessing.