A patient guide to Ankylosing Spondylitis
Goal of this guide... 1 Understanding your ankylosing spondylitis... 2 Signs and symptoms... 3 Causes and risk factors... 4 Diagnosing ankylosing spondylitis... 4 Ankylosing Spondylitis treatment approaches... 5 Medications... 5 Physical therapy and exercise... 8 Eating healthy... 9 Coping and support...10 References and resources...11
Goal of this guide The goal of this guide is to provide you with a comprehensive resource on ankylosing spondylitis. This guide includes information on causes, symptoms, diagnosis and treatment. It gives you ideas of ways that you and your doctor can work together to manage your symptoms. This guide may also help your family and friends understand your condition. Goal of this guide 1
Understanding your ankylosing spondylitis Understanding your ankylosing spondylitis Ankylosing spondylitis is a chronic (long-term) disease. It results in inflammation of the spinal joints. The joints at the base of the spine, where the spine meets the pelvis, are also affected. Over time, ankylosing spondylitis can cause the affected spinal bones to fuse together. This can limit the movement and flexibility of the spine and may affect posture. Ankylosing spondylitis cannot be prevented, but early recognition of symptoms may make treatment more successful. Most people with ankylosing spondylitis can live full, productive lives. 2
Signs and symptoms The course of ankylosing spondylitis is diffcult to predict; it varies for each individual. Ankylosing spondylitis causes inflammation (swelling) of the joints in the spine and the pelvis. As the disease progresses, the body attempts to heal by forming new bone matter. The new bone forms over the space between spinal bones, causing them to join or fuse together. This causes those areas of the spine to stiffen and become less flexible. Initially, the symptoms may come on gradually. Early symptoms include pain and stiffness in the lower back between the pelvis and the spine that comes and goes. The pain and stiffness may feel worse first thing in the morning, at night or after periods of inactivity. In some cases, it may wake you from sleep. The back pain usually gets better with exercise or activity. Over time, other areas of the spine may be affected. The flexibility and movement of the spine may decrease; this can become disabling in some people. Also, there can be inflammation in the regions where ribs meet the spine or the breastbone. This may make it more diffcult to expand your chest. Fatigue is also a common symptom. Understanding your ankylosing spondylitis Less common symptoms include: Inflammation of the eye Thinning of the bones Pain in the heel Pain and stiffness in the hips Reduced appetite and weight loss Mild fever Pain and swelling in the shoulders, knees and ankles 3
Understanding your ankylosing spondylitis Causes and risk factors The cause of ankylosing spondylitis is not known; however, genetics seem to play a role. People who have a gene that produces a specific genetic marker (a protein called HLA-B27) are at greater risk for developing ankylosing spondylitis. The risk factors for ankylosing spondylitis include genetics, gender and family history. In contrast to other types of joint disease, males show a greater risk for developing it than females. People with a family history of the disease are also at higher risk. It typically begins between the ages of 20 and 40, but it can occur before age 10 as well. Diagnosing ankylosing spondylitis No single test can diagnose ankylosing spondylitis. Your doctor uses information from several sources to arrive at the diagnosis. Some common tests used to diagnose ankylosing spondylitis Test Blood tests Imaging tests Possible findings/purpose ESR (erythrocyte sedimentation rate) usually is elevated, which indicates inflammation CBC (complete blood count) checks for anemia, a common consequence of chronic inflammation; the CBC test checks many other blood components as well HLA-B27 (human leukocyte antigen B27) test may be positive X-ray of the spine and pelvis looks for effects of the disease in bones and joints MRI (magnetic resonance imaging) of the spine examines cartilage, the soft tissue between bones CT (computed tomography) provides a more detailed look than x-rays and gives different views of the joints 4
Ankylosing spondylitis treatment approaches There is no cure for ankylosing spondylitis. However, a number of treatments can help to manage symptoms. Medications Physicians prescribe a number of different types of medications to help manage the symptoms. Medications used to treat ankylosing spondylitis Medication Examples Uses Potential side effects class and information Nonsteroidal Over the counter Relieve Stomach upset and antiinflammatory Motrin) pain and Possible kidney damage ibuprofen (Advil, inflammation, bleeding may occur drugs (NSAIDs) stiffness naproxen (Aleve) Prescription required diclofenac (Voltaren) etodolac (Lodine) indomethacin (Indocin) naproxen (Naprosyn, Naprelan, Anaprox) meloxicam (Mobic) sulindac (Clinoril) piroxicam (Feldene) celecoxib (Celebrex)* nabumetone (Relafen) Reduce painful joint swelling Do not affect the processes that damage the joints Often used in combination with other medications Gastrointestinal (GI) bleeding Skin reactions Can increase risk of heart attack and stroke Ankylosing spondylitis treatment approaches *Cox-2 Inhibitor 5
Ankylosing spondylitis treatment approaches Medications used to treat ankylosing spondylitis (continued) Medication Examples Uses Potential side effects class and information Corticosteroids methylprednisolone Short-term Bruising (Medrol) relief of joint Weight gain prednisone swelling Thinning of (brand not available) and pain the bones betamethasone (Celestone) Can slow damage to joints Useful for patients who cannot take NSAIDs or who are not responding to other treatments Cataracts (from long-term use) Mood swings Increased appetite High blood glucose Hardening of arteries Osteoporosis (from long-term use) Do not stop use abruptly Taper off dose over time with guidance from your doctor Do not use for long periods of time Take with food Biologic adalimumab BRMs Heart failure response (Humira) block the Headache modifiers etanercept Injection-site reactions (BRMs) (Enbrel) Flu-like symptoms infliximab (Remicade) golimumab (Simponi) destructive effects of the immune system and slow disease progression May be used in combination with other medications Increase in certain types of cancer Upper respiratory tract infections Infusion-related reactions such as fever, chills (Remicade only) Tuberculosis (TB) and other serious infections Contact your doctor before receiving any vaccinations 6
Medications used to treat ankylosing spondylitis (continued) Medication Examples Uses Potential side effects class and information Disease methotrexate Suppress Stomach upset modifying (Rheumatrex, immune Headache antirheumatic Trexall) system drugs (DMARDs)* Slow progression of joint damage May slow the progression of the disease Mouth ulcers May affect liver function Increased risk of infection Increased sensitivity to the sun Known to cause birth defects Pregnancy is to be avoided if either partner is taking methotrexate and for three months after treatment for males and one ovulatory cycle after for females sulfasalazine Reduce Stomach upset (Azulfidine) inflammatory Nausea symptoms Rash More effective Headache for controlling symptoms in Heartburn areas other Increased sensitivity than the spine to the sun Not recommended for patients with a sulfa or aspirin allergy Take with food Ankylosing spondylitis treatment approaches If joint pain and damage are severe, medications may not bring enough relief. In some cases, surgery may be recommended. Some patients consider using nutritional supplements to try to improve their symptoms or joint flexibility. Make sure to speak with your doctor before taking any nutritional supplements; these can be harmful and life-threatening under some circumstances. *There are currently no DMARDs that are FDA-indicated for ankylosing spondylitis; however, some DMARDs are often used to treat ankylosing spondylitis. Talk to your doctor about whether or not these drugs would be appropriate for you. Your benefit plan may not cover the use of DMARDs for ankylosing spondylitis. Call the number on the back of your ID card for more information. 7
Ankylosing spondylitis treatment approaches Physical therapy and exercise Your doctor may recommend physical therapy. Physical therapy can help to improve strength and flexibility. It may also help to relieve pain. Speak to your physical therapist about exercises you can do at home to maintain or increase your flexibility. The physical therapist may suggest: Range-of-motion exercises Stretching exercises Breathing exercises Definition ADL Activities of daily living; this includes things such as bathing, brushing your teeth and getting dressed Over time, your posture may begin to change. Your upper body may begin to lean forward. If your spine is fusing, these strategies can help to maintain an upright (rather than a stooped) position. These strategies can also make it easier for you to perform activities of daily living (ADL): Proper sleeping position (flat on back) Proper walking position Abdominal and back exercises 8
Eating healthy Eating a healthy diet gives your body the fuel it needs to perform at its best. Invest the time to learn how to improve your diet. Good nutrition can: Improve immune function Reduce inflammation Make muscles stronger Increase energy Stabilize your mood Manage fatigue A balanced diet includes plenty of fruits, vegetables and whole grains. It also limits salt, sugar, saturated fat and alcohol. It may include daily vitamins and minerals. Foods rich in omega-3 fatty acids, such as fish, may be helpful in reducing inflammation. Ankylosing spondylitis treatment approaches If you are looking for a specific diet to follow, the Dietary Approaches to Stop Hypertension (DASH) diet tops many lists and is recommended by the U.S. Department of Agriculture (USDA) as an ideal food plan for all Americans. Originally, the purpose of the diet was to be used by people with high blood pressure. It may serve useful as a foundation for your own eating plan. This food plan is rich in fruits, vegetables, whole grains and low-fat dairy products. It also includes meat, fish, poultry, nuts and beans. It limits red meat, foods and beverages sweetened with sugar, and foods high in fat. Ask your doctor if there are vitamins or minerals that could help to manage your symptoms and keep you healthy. Also, note how your diet affects your symptoms. Try to avoid any foods that seem to increase swelling or inflammation. Important information Smoking People with ankylosing spondylitis should not smoke; smoking can add to the diffcult breathing that is often part of the disease itself 9
Ankylosing spondylitis treatment approaches Coping and support It can be stressful to cope with a chronic disease like ankylosing spondylitis, especially one that is unpredictable and changes over time. Here are some tips for helping you to cope: Educate your friends and family about your disease Ask for help when you need it Join an online or in-person support group Ask your doctor for a referral to a counselor with experience in helping people who have chronic diseases 10
References Ankylosing spondylitis. Mayo Clinic. 14 May 2012. <http://www.mayoclinic.com/health/ankylosing-spondylitis/ds00483>. Ankylosing spondylitis. PubMed. 14 May 2012. <http://www.ncbi.nlm.nih.gov/pubmedhealth/pmh0001457/>. Ankylosing spondylitis. Spondylitis Association of America. 14 May 2012. <http://www.spondylitis.org/about/as.aspx>. References and resources Resources Arthritis Foundation www.arthritis.org 800.283.7800 National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) www.niams.nih.gov 877.226.4267 Spondylitis Association of America www.spondylitis.org 800.777.8189 11
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Prime Therapeutics Specialty Pharmacy LLC (Prime Specialty Pharmacy) is a wholly owned subsidiary of Prime Therapeutics LLC (Prime). Prime Specialty Pharmacy works with your health plan to provide the specialty medications you need. Prime Specialty Pharmacy wants to help you get the most from your medication therapy by: > Ensuring you have the medications you need when you need them > Providing ongoing, personalized support from disease-specific experts > Helping you manage the details so your condition does not manage you For more information on Prime Specialty Pharmacy, call 877.627.MEDS(6337) or visit us at PrimeTherapeutics.com/Specialty. This guide provides an overview of ankylosing spondylitis. It is not meant to replace medical advice from your doctor, pharmacist or other health care provider. Please contact them for more information. This guide is intended to be accurate. However, Prime and Prime Specialty Pharmacy are not responsible for loss or damage due to reliance on this guide. Brand names are the property of their respective owners. 4956 2012 Prime Therapeutics LLC 05/12