Restless Legs Syndrome A REGIONAL EDUCATION INITIATIVE OF THE RLS FOUNDATION

1610 14th St. NW Ste. 300 Rochester, MN 55901 Date: Wednesday 5/25/11 507-287-6465 Time: 8:00 PM ET, 7:00 PM CT [email protected] To Dial In Call: 1-800-371-9219 www.rls.org Enter Conference ID# 1240162

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Basic Information about RLS Learning Objectives are to: • Better understand RLS • Know what treatment options are available • Learn about alternative therapies and symptom management • Learn about current scientific research and how it can help • Discover local resources and support in your area • Effectively communicate information to others

Inside this issue:

Definition Restless legs syndrome (RLS) is a treatable neurological disorder in which your limbs (especially legs) feel extremely uncomfortable during times of inactivity. While you're sitting or lying down, you often experience an overwhelming urge to move. When you do so, the unpleasant feeling of RLS is temporarily relieved. Restless legs syndrome can disrupt sleep and make traveling difficult. A prolonged lack of sleep can lead to anxiety, depression, confusion, or slowed thought processes. Diagnosis The presence of RLS cannot be confirmed with a lab test. An official RLS diagnosis based on your symptoms can only be made by a licensed healthcare provider. To be

THE

THREE MAIN

CATEGORIES OF

Alternative Therapies

2

Speaker Info

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FOR RLS ARE:

NJ RLS Resources

3

MEDICATIONS

RLS Foundation

4

2)

TREATMENT OPTIONS

1)

4

RLS Research

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Who does RLS affect? RLS can begin at anytime and generally worsens with age. Women are more likely than men to develop RLS. You may be at greater risk if someone else in your family has it. RLS affects people all over the world. In the United

What are my treatment options?

Prescription Drugs 2

Lifestyle Changes

diagnosed with primary RLS the following criteria must be met: • Urge to move the legs. Sometimes the arms or other body parts are involved in addition to the legs. • Onset or exacerbation with rest or inactivity. Rest includes both lack of movement and decreased mental activation. • Relief with movement. • Circadian pattern. RLS symptoms usually occur or worsen in the evening or at bedtime.

PRESCRIPTION

ALTERNATIVE

THERAPIES

3)

LIFESTYLE

MODIFICATIONS

Living with RLS can become frustrating and tiresome. Take comfort in knowing that you have options available which can significantly reduce your symptoms and improve your quality of life. More detailed information on treatment is presented on page 2. Consult with a healthcare provider to find options that are best suited for you! A list of healthcare providers in your area can be found on page 3.

States, RLS is estimated to affect nearly 10 million adults and approximately 1.5 million children. What causes RLS? The cause of primary RLS is unknown. It is a disorder that involves the central nervous system. Scientific research has determined that RLS could be hereditary. Studies also suggest a deficiency in brain iron, particularly within dopamine containing neurons, may be the culprit. RLS treatment includes medications that target dopamine. Secondary RLS may also occur as a complication in patients with peripheral neuropathy, iron deficiency, chronic kidney disease, Parkinson’s disease and pregnancy.

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RESTLESS LEGS SYNDROME

Prescription Drugs Used to Treat RLS If you have RLS without any associated condition, medications can provide relief. Several trials may be necessary for you and your doctor to find the most effective medication and dosage for you. In some patients, a combination of medications may work best. Sometimes, treating an associated condition such as iron deficiency greatly relieves symptoms of RLS. However, iron supplements should only be taken under medical supervision and after your doctor has checked your blood iron level.* There are five categories of drugs that have been found helpful for RLS. They include the dopaminergic agents (agonists and precursors), sedative

hypnotics (benzodiazepines), opioids, antiepileptic drugs, and iron. There are currently three FDA APPROVED medications DRUGS FOR RLS: that have been approved by 1) REQUIP® the Food and (ROPINIROLE) Drug 2) MIRAPEX® Administration (PRAMIPEXOLE) (FDA) for the 3) HORIZANT® treatment of (GABAPENTIN moderate to severe RLS. ENACARBIL) The other medications listed in the table below have been known to provide some relief when used “off label.” In the United States, the regulations of the FDA permit physicians to prescribe approved medications for other than

Classes of Drugs Used to Treat RLS This is not a complete list. RLSF does not endorse any of the drugs. More details can be found in the RLS Medical Bulletin. Type of Drug

Brand Name® (Generic)

Dopamine Agonists

Requip® (ropinirole)* Mirapex®(pramipexole)* Neupro® (rotigotine)

Dopamine Precursors

Sinemet® (carbidopa/levodopa)

Sedative Hypnotics

Klonopin® (clonazepam) Restoril® (temazepam) Ambien® (zolpidem) Halcion® (triazolam)

Opioids

Vicodin® (hydrocodone) (codeine) OxyContin® Percocet® Roxicodone®(oxycodone) Dolophine® (methadone) Ultram® (tramadol)

Antiepileptic/ Anticonvulsant Drugs

Depakote® (valproic acid) Tegretol® (carbamazepine) Lamictal® (lamotrigine) Neurontin® (gabapentin) Lyrica® (pregabalin) Horizant® (gabapentin enacarbil)*

Iron

Feosol®, Fer-In-Sol®, Slow-Fe®

*FDA approved, first line of treatment

their intended indications. This practice is known as off-label use. The content of this document is offered for informational purposes only and no products are endorsed by the RLS Foundation. It is very important to talk to your healthcare provider before administering any medication changes. * For more information on iron request a copy of Understanding Iron and RLS from the Foundation or download from our website at www.rls.org/publications. Special Thanks to Our Sponsor The RLS Foundation thanks UCB for their support of this regional patient educational initiative.

Alternative Therapies Please note that these alternative therapies may be considered but have not been medically or scientifically demonstrated to be effective. For some individuals they may aid in the temporary management of RLS symptoms. Learning methods to cope with your RLS can significantly improve your quality of life. If your RLS symptoms worsen after starting a new therapy, be sure to talk with your doctor. Progressive Muscle Relaxation (or PMR) is a technique that helps in reducing stress and anxiety by alternately tensing and relaxing your muscles. PMR utilizes both a physical and mental component which can aid in inducing sleep and may help reduce legs symptoms in some patients. Biofeedback involves giving patients feedback to recognize certain states of tension or sleep stages so that they can either avoid or repeat them voluntarily. Biofeedback requires being monitored with an electroencephalogram (EEG), a device that measures brain waves. Its efficacy in the management of RLS is uncertain. Cognitive-Behavioral Therapy (CBT) emphasizes observing and changing negative thoughts (such as, "I'll never fall asleep"). It also employs actions intended to change behavior. Studies have been mixed on its effectiveness. Acupuncture is a therapeutic procedure, developed in China, which involves inserting needles into various points on the body to relieve pain. Acupuncture is believed to be ...continued on page 4

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A REGIONAL EDUCATION INITIATIVE OF THE RLS FOUNDATION

Please ask Dr. Nadkarni your questions at the end of her session.

NJ Healthcare Providers The RLS Foundation provides this information without endorsing or recommending any individual.

Dr. Jeffrey Barasch (Ridgewood) (201) 447-3866 Dr. Brian Benoff (Englewood) (201) 871-8366 Dr. Timothy Brannan (Jersey City) (201) 309-2380 Dr. Debra J. DeLuca (Lawrenceville) (609) 895-9000 Dr. Dennis Fielding (Hamburg) (973) 827-7800 Dr. Adam M. Glassman (Englewood) (201) 871-8366 Dr. Vipin Garg (Elizabeth) (908) 994-8694 Dr. Stephen E. Kabel (Delran) (856) 461-6200 Dr. Michael G. Kailas (Teaneck) (201) 287-0300 Dr. Robert Kosinski (Eatontown) (732) 380-0020 Dr. Roger Kurlan (Summit) (908) 522-6144 Dr. Anthony Leone (Haddonfield) (856) 428-1890 Dr. Lewis M. Milrod (Edison) (732) 548-2724 Dr. Abraham D Morganoff (Warren) (968) 769-8555 Dr. Mangala Nadkarni (West Orange) (973) 322-9800 Dr. Kalpeshkumar Patel (Freehold) (732) 625-8200 Dr. David S. Safar (Wayne) (973) 839-5005 Dr. Anays Sotolongo (New Brunswick) (732) 235-7840 Dr. Ira M. Stein (Atlantic City) (609) 345-8409 Dr. Mary Swigar (New Brunswick) (732) 235-7647 Dr. William D. Wasserstrom (East Brunswick) (732) 238-0804

RLS Expert Teleconference Speaker Mangala Nadkarni, MD Dr. Nadkarni, a board-certified physician in neurology, clinical neurophysiology and sleep medicine, leads the physician team at The Center for Sleep Disorders and Saint Barnabas Medical Center. Under her direction, The Center for Sleep Disorders received accreditation from the American Academy of Sleep Medicine (AASM). She has extensive training and experience in sleep medicine and neurology -- often serving as a lecturer and educator in these areas of expertise. She is an active researcher, currently leading a study regarding restless legs syndrome. Dr. Nadkarni completed residency training in neurology at the University of Dentistry and Medicine of New Jersey, performed an epilepsy fellowship at New York Hospital - Cornell Medical Center, and completed a post-graduate course in sleep medicine at Stanford School of Sleep Medicine. Dr. Nadkarni is a fellow in the AASM and serves on New Jersey Sleep Society and the Professional Advisory Board of the Epilepsy Foundation of New Jersey. She has been nominated as a Top Physician in America by Consumer Research Council of America for the years 2005 and 2006. She has co-authored articles that have appeared in prestigious peer-reviewed medical journals such as Neurology and The Journal of Clinical Neurophysiology.

RLS Internet Resources Restless Legs Syndrome Foundation www.rls.org

Narcolepsy Network www.narcolepsynetwork.org

American Acad. of Sleep Medicine www.aasmnet.org

National Institutes of Health www.nih.gov

American Sleep Apnea Association www.sleepapnea.org

We Move www.wemove.org

International RLS Study Group www.irlssg.org

National Sleep Foundation www.sleepfoundation.org

New Jersey Support Groups Reach out to RLS Foundation Support Group Leaders (SGLs) in your area. They can provide much needed support, discussion and resources on RLS. They have undergone training and hold meetings on a regular basis. Contact them for more information.

Elizabeth Rochette 973-715-3868 [email protected]

Dot Quill 609-522-9401 [email protected]

If you are interested in becoming a volunteer SGL, contact the RLS Foundation.

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About the Restless Legs Syndrome Foundation The Restless Legs Syndrome Foundation (RLSF) is a nonprofit 501(c)3 organization. In 1992, RLSF was incorporated as a nonprofit organization to address the growing need for research and information about this little known condition. The Foundation has grown from a simple volunteer staff to a national organization based in Rochester, Minnesota. Our understanding of RLS has also grown. We now know that the condition is not rare at all. In fact, research suggests that about 1 in every 10 persons of the general population has this neurologic condition. If you’re not already a Foundation member, please consider joining a community dedicated to making the future better for everyone living with RLS. Our Mission The RLS Foundation is dedicated to improving the lives of the men, women, and children who live with this often devastating disease. The RLS Foundation’s goals are to increase awareness of RLS, to improve treatments, and, through research, to find a cure. ….continued from page 2 effective in arthritis treatment and may also stimulate those parts of the brain that are involved in RLS. Reflexology is based on the belief that the brain, head, and spine all respond to indirect massage of specific parts of the feet. Anecdotally reflexology may be effective in helping people lessen the severity of their symptoms and promote an overall sense of wellbeing. Nutritional supplements of vitamin E, calcium, magnesium, and folic acid incorporated into your diet may be helpful for people with restless legs syndrome. Please remember to share with your doctor when you begin or end an alternative RLS therapy.

Lifestyle Modifications In addition to working closely with your healthcare provider, incorporating the following changes in your daily lifestyle may improve your RLS symptoms.

relaxing in the hour before bedtime can help as well. You may want to maintain a daily sleep diary* to determine what behaviors are most effective for you.

Exercising for as little as 15-20 minutes a day can make a difference in your RLS and improve your overall health.

Keep track of medications you take. Non-RLS medications, herbal, and over-the-counter remedies can make RLS worse. These may include drugs used to treat high blood pressure, heart conditions, nausea, colds, allergies, and depression.*

Engage your mind in activities if you have to be seated or still for long periods. Puzzles, reading a good book, needlework and interesting discussions can keep you occupied and take your mind off your RLS. Keep a food diary to determine if certain foods or ingredients make your symptoms worse. Some people have found that avoiding tobacco, alcohol, caffeine and certain foods is beneficial. Maintain good sleep habits by establishing routine behaviors to help improve your sleep. A regular time for going to bed and waking in the morning that you stick to even on weekends and during vacations may be effective. Exercise before dinner, avoiding naps, and doing something

Relaxing with techniques can help you personally deal with RLS. These could include light stretching, walking, yoga, meditation, taking a hot or cold bath and massage.* * More information on these topics are available from the RLS Foundation. FIND WHAT WORKS BEST FOR YOUR RLS!

RLS Foundation has many publications and specialty brochures with more detailed information on topics related to RLS. Request a free copy or download from our website. Visit www.rls.org/publications.

The RLS Foundation has merchandise for sale on the online store. Please visit www.rls.org/store. This is a great way to spread awareness and show your support!

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Current Research on Restless Legs Syndrome It is our sincere hope that scientific research conducted on RLS will lead to better treatment options and eventually a cure. In 2010 and early 2011, there were over 300 RLS-related articles published. The research highlighted below is representative of some of our increases in the understanding of the disease. Research in the area of Epidemiology (the study of patterns of health and illness and associated factors at the population level): • Restless legs syndrome: Understanding its consequences and the need for better treatment. (Earley CJ,

Silber MH. Sleep Med 2010;11:807-15) The purpose of this review was to assess the medical literature on the consequences of RLS and the limitations of existing therapies. •Prevalence and disease burden of primary restless legs syndrome: Results of a general population survey in the United States. (Allen RP, Bharmal M, Calloway M. Movement Disorders 2011;26:114-20) The diagnostic tools provide a conservative estimate of U.S. census-weighted prevalence of 2.4% for primary RLS. These individuals had a mean productivity loss of one day per week. •Health-related quality of life and restless legs syndrome among women in Sweden. (Wesstrom J, Nilsson

S, Sundstrom-Poromaa I, Ulfberg J. Psychiatry Clin Neurosci 2010;64:574-9) A random sample of 5,000 Swedish women aged 25-64 years completed an RLS survey. Compared to controls, Swedish women with RLS scored lower on health-related quality of life issues than the control group. •Transient restless legs syndrome during pregnancy is a risk factor for the chronic idiopathic form.

(Cesnik E et al. Neurology 2010;75:2117-20) Research in the area of Dopaminergic Agents, Impulse Disorders, and Augmentation: • Impulse control disorders with the use of dopaminergic agents in restless legs syndrome: a case-control study. (Cornelius JR, Tippmann-Peikert M, Slocumb NL, Frerichs CF, Silber MH. Sleep. 2010 Jan 1;33(1):81-7) •Progressive development of augmentation during long-term treatment with levodopa in restless legs syndrome: results of a prospective multi-center study. (Högl B, Garcia-Borreguero D, Kohnen R, et al. J Neurol 2010;257:230-7) The RLS Foundation is pleased to be your most trusted source of non-biased information on RLS. For the latest information on RLS research as well as ongoing clinical trials please visit www.rls.org. NightWalkers is the publication that gives you the latest news on both research grants funded by the RLS Foundation and other research of note (In the News). For more information on grants we have funded, please visit www.rls.org/ grants. NighWalkers is available on a quarterly basis to members of the Foundation. If you are not a member of the Foundation, please consider joining! A membership envelope with a special discounted membership rate has been included in your conference packet just for you.

Thank you for participating in this phone conference! We hope that you found it useful, informative, and gained new insights into this devastating disease. Please be sure to complete and return the enclosed evaluation to the RLS Foundation. The mission of the RLS Foundation is to Increase Awareness, Improve Treatments, and Find a Cure. Join us by becoming a member today!