Excerpts from the Q&A

In March 2018, the RLS Foundation hosted the webinar “Medications for RLS,” presented by Michael Silber, MB, ChB, a board certified neurologist and sleep specialist at the Center for Sleep Medicine at Mayo Clinic in Rochester, Minnesota, an RLS Quality Care Center. Dr. Silber is an active member of the RLS Foundation's Scientific and Medical Advisory Board, and the current chair of its Opiates Committee.

The following questions and answers are based on the webinar. Visit the online Member Portal to view the full presentation. To see a listing of all of the Foundation's upcoming webinars, visit www.rls.org.

Individuals suspecting they may have RLS should consult a qualified healthcare provider. Literature and webinars by the RLS Foundation, including this blog post, are offered for informational purposes only and should not be considered a substitute for the advice of a healthcare provider. Prior to making any changes to your treatment plan, please discuss treatment options with your healthcare provider.

Q: How can I tell the difference between augmentation and normal, mild, continuing symptoms of medicated RLS (on pramipexole)?

A: It can be difficult to do that, especially if the restless legs are worsening for some other reason, such as an anti-depressant use or iron levels are dropping. With augmentation, symptoms usually move to earlier in the day, and the restless legs recur at night. And usually, if the dose increases, it gets worse rather than better. Those would be the essential characteristics. But yes, it can be a little difficult and sometimes it needs an expert who has worked with lots of restless legs patients to be sure that it really is augmentation, rather than the disorder worsening for some other reason. If RLS worsens with therapy, consult with the provider who is prescribing the drug.

Q: What is the best medication in terms of little chance of developing augmentation?

A: I’m assuming the question concerns people with chronic restless legs who are going to need daily medication. If you want to have the lowest risk of augmentation, it would be one of the alpha 2-delta ligands (gabapentin, gabapentin enacarbil, or pregabalin). I should mention that gabapentin and pregabalin are off-label uses for restless legs and only gabapentin enacarbil has been approved by the FDA for RLS treatment. There may be reasons not to use those drugs – for example, people who are markedly obese or who have active depression. But if your only consideration is what is the lowest risk for augmentation, those are the drugs to use rather than the dopamine agonists. But each patient is different, and we have to balance the different side effects of each category of drug.

Q: What effect, if any, do opioids have on sleep disruption associated with RLS?

A: Opioids can be very effective for sleep disruption associated with RLS. I always ask people when they come back, “Have you got sleepy during the day? Are you okay driving?” And most patients who have had a good response will say, “Doctor, it’s wonderful. I couldn’t sleep at all with restless legs. I’m much more alert taking opioids at night than I was before I took them.” This surprises some physicians because they’re expecting their patients to have severe day-time side effects. With low doses at night, most people will have very nice sleep because we are eliminating restless legs, and opioids are somewhat sedating. Of course, opioids should only be used for RLS refractory to other drug treatments.

Q: What options are there for treating insomnia that don't either lead to dependence or exacerbate RLS symptoms?

A: I presume the question relates to insomnia unrelated to restless legs – patients who have both psychophysiological insomnia (learned insomnia) and restless legs. Our approach to chronic insomnia disorder today would first be to identify contributing causes, such as anxiety, depression, restless legs, chronic pain, sleep apnea, etc. If there are no obvious contributing factors which can better be addressed, then our approach today is cognitive behavioral therapy for insomnia rather than medications. So, we would generally recommend cognitive behavioral therapy, which can be administered by any knowledgeable health provider, including nurses, physicians or psychologists. Today, what’s nice is that it can also be done online. There are various reputable online self-help programs available. For chronic insomnia, we are tending to avoid medications as much as possible.

Q: Is there particular opioid that you prefer to use for patients that don’t get relief from other remedies?

A: There are various choices on the market. It really depends on individual providers and what they are familiar with. For instance, at Johns Hopkins, where they’ve had probably more experience with opioids than anywhere else, methadone is their drug of choice. We’ve tended to start with oxycodone, often in the long-acting form. Controlled release morphine has also been used. I think it depends on what each provider is familiar with. I don’t think that there is a specific rule.

Q: How long (and at what dosages) can an RLS sufferer use an opioid without becoming addicted?

A: The majority of our patients don’t develop long-term addiction, and there are patients that have used them for ten or more years without problems. The dose might slightly increase. Addiction can occur in a small minority of patients, sometimes fairly quickly. However, it’s rare in the low doses we use, especially with taking reasonable precautions.

Q: Is it possible for your whole body to be affected by RLS symptoms?

A: We’ve seen augmentation spread not just to the arms but to the trunk, as well. There are some unusual people with restless legs, who even from the beginning experience it in the back or the pubic area, or sometimes the arms more than the legs. So, yes, it can affect different areas of the body. The vast majority of patients, before augmentation develops, will have it in the legs. If, from the beginning, it’s entirely in some other area of the body, I’m very careful to be sure it is restless legs and not some other disorder mimicking restless legs.

To view the webinar, visit the Member Portal at www.rls.org. If you are not a member of the RLS Foundation, join us! Scholarship memberships are available. Email info@rls.org for more information.