Celebrities with ankylosing spondylitis

Ankylosing spondylitis (AS) is a chronic inflammatory disease causing axial arthritis, frequently resulting in inflammatory low back pain early in the disease course, with eventual severe impairment of spinal mobility due to structural changes ultimately leading to spinal fusion. AS is the archetype of a heterogeneous group of arthritides within the rheumatic diseases known formerly as the seronegative spondyloarthropathies but now frequently referred to as spondyloarthritis (SpA). In addition to axial arthritis, AS can result in peripheral arthritis, enthesitis, and uveitis, all shared characteristics of the SpA.

Epidemiology

Recent population estimates indicate that the prevalence of AS in the United States is approximately 0.2-0.5%. Based on data from multiple countries, the age- and sex-adjusted incidence of AS is 0.4-14 per 100,000 person-years. Prevalence of AS in the population increases to approximately 5% among patients who are HLA-B27 positive. AS occurs more frequently in men than women (2:1). Age of disease onset usually peaks in the second and third decades of life. Approximately 80% of patients with AS experience symptoms at ≤ 30 years of age, while only 5% will present with symptoms at ≥ 45 years of age.

Etiology

The precise etiology of AS remains mostly unknown, though heritability is frequently cited as a significant contributor. Major histocompatibility alleles, particularly HLA-B27, may account for up to one-third of the genetic effect. Other MHC alleles that may play a minor role in AS heritability include HLA-B60 and HLA-DR1. Recent genome wide association studies (GWAS) of patients with AS have identified susceptibility loci, including IL23R, ERAP1, and IL1R2 among others.

Clinical Manifestations

Most patients with AS will experience symptoms of inflammatory back pain due to sacroiliitis and axial arthritis of the spine. This will frequently be accompanied by peripheral arthritis, enthesitis, and/or acute anterior uveitis. Cardiac involvement resulting in aortitis and arrhythmias occur less commonly.

Spinal inflammation results in symptoms of back stiffness, soreness, and pain. Symptoms tend to worsen in the early morning hours, causing sleep disturbance in many patients. Inflammatory back pain will tend to improve with stretching and physical activity and worsen with prolonged inactivity.

The natural history of AS for some patients includes structural abnormalities of the spine from development of new bone formation. These syndesmophytes frequently bridge adjacent vertebrae, resulting in impaired spinal mobility. This process tends to be slow, but when it progresses can ultimately lead to complete spinal fusion or ankylosis (i.e. the so-called “bamboo spine”). For many patients, ankylosis classically begins at the sacroiliac joints and progresses in an ascending manner, from the lumbar spine to eventually the cervical spine. Based on more recent data, the pattern of spinal fusion may actually occur in a saltatory manner rather than strictly in continuously ascending fashion.

Diagnosis

There is no consensus on the diagnosis of AS, but the 1984 Modified New York classification criteria has been generally accepted for both research and clinical purposes. It requires at least 1 clinical manifestation and at least 1 radiographic parameter. Clinical manifestations include ≥ 3 months of inflammatory back pain that improves with exercise and exacerbated by rest, limitation of lumbar motion in both frontal and sagittal planes, and limitation of chest expansion compared to the normative population. Radiographic parameters include ≥ grade 2 sacroiliitis bilaterally or grade 3 or 4 sacroiliitis unilaterally.

Because many patients with early AS may not have radiographic evidence of sacroiliitis, the Assessment of Spondyloarthritis International Society (ASAS) has generated classification criteria for axial SpA. These recent criteria may aid clinicians in the diagnosis of axial SpA well before patients fulfill AS criteria by the 1984 Modified New York criteria.

The ASAS criteria for axial SpA mandates patients have back pain for ≥ 3 months and be < 45 years of age while fulfilling 1 of the following 2 sets of criteria:

Set 1

  • Sacroiliitis on imaging* and ≥ 1 SpA feature**

Set 2

  • HLA-B27 and ≥ 2 SpA features**,

*Sacroiliitis on imaging is based on active inflammation on MRI highly suggestive of sacroiliitis associated with SpA, or on definite sacroiliitis based on the 1984 Modified New York Criteria.

**SpA features include inflammatory back pain, arthritis, enthesitis, uveitis, dactylitis, psoriasis, Crohn’s disease/ulcerative colitis, good response to NSAIDs, family history of SpA, HLA-B27, and elevated CRP.

Treatment

Depending on whether symptoms include axial arthritis, peripheral arthritis, or enthesitis, effective treatment modalities will vary. All patients with AS should undergo physical therapy to improve spinal mobility and physical functioning. Non-steroidal anti-inflammatory drugs (NSAIDs) are nearly always used in conjunction with physical therapy to alleviate symptoms of inflammatory back pain. Any NSAID will usually be effective, when used at near maximum recommended doses; however, indomethacin has been considered the NSAID of choice based mostly on anecdotal evidence. If NSAIDs fail to improve symptoms of sacro-iliitis, intra-articular corticosteroid injections of the sacroiliiac joints may be considered. The introduction of TNF inhibitors, including etanercept, infliximab, adalimumab, and golimumab, have contributed further to alleviating the symptoms of axial arthritis. Based on data from clinical trials, patients with active AS reported not only reduced inflammatory back pain but improved physical functioning, fatigue, and quality of life. As is true for all treatment modalities for AS, TNF inhibitors have not been demonstrated to slow the disease progression of patients with AS destined to incur spinal fusion.

For symptoms of peripheral arthritis, the disease-modifying antirheumatic drugs (DMARDs) including sulfasalazine and methotrexate are frequently effective and well-tolerated. Leflunomide has not demonstrated to be that effective in AS, unlike rheumatoid arthritis and psoriatic arthritis.

Prognosis

The prognosis for many patients with AS will be complete spinal ankylosis, while others will experience intermittent flares between bouts of clinical remission. The long-term goal in the treatment of AS is to preserve as much physical functioning, decrease work absenteeism, and maintain a high quality of life.

  1. Braun J, Sieper J. Ankylosing spondylitis. Lancet 2007;369(9570):1379-90.
  2. Reveille JD. Epidemiology of spondyloarthritis in North America. Am J Med Sci 2011;341(4):284-6.
  3. Dillon CF, Hirsch R. The United States National Health and Nutrition Examination Surveyand the epidemiology of ankylosing spondylitis. Am J Med Sci 2011;341(4):281-3.
  4. Rudwaleit M, van der Heijde D, Landewé R, Listing J, Akkoc N, Brandt J, et al. The development of Assessment of SpondyloArthritis international Society classification criteria for axial spondyloarthritis (part II): validation and final selection. Ann Rheum Dis 2009;68(6):777-83.

Ankylosing spondylitis (AS) is a type of arthritis that mainly affects the joints of the spine. Its name is Greek and means “stiffening of a joint”(ankylos) and “vertebrae” (spondylo). The vertebrae are the bones of the spine that, stacked one on top of the other, form the spinal column. Inflammation of the spaces between the vertebrae causes back pain and stiffness.

The hallmark sign of AS is inflammation of the sacroiliac joints, where the base of the spine (the sacrum) meets the pelvis (iliac bone).

AS is a lifelong disease with no cure. The symptoms typically begin in early adulthood and gradually worsen, but severity varies from person to person.

What causes ankylosing spondylitis?

Scientists believe that AS is caused by a combination of genetic and environmental factors. The vast majority of Caucasian people who develop AS have a genetic marker called HLA-B27; however, most people who have HLA-B27 do not develop AS. Also, not everyone who develops AS has the marker and the condition is much less common in some ethnicities. Over 60 genes associated with AS have been identified, so HLA-B27 does not tell the entire story.

The working theory is that an infection, in particular an infection of the gastrointestinal (GI) system, may trigger the inflammation that causes AS in people who are genetically predisposed. People who have had frequent GI infections have a higher risk of developing AS.

How is ankylosing spondylitis diagnosed?

There is no single test that can show that a person has AS, so diagnosis depends on a thorough medical history and physical examination. Most important is the description of symptoms, in particular the nature of the pain and stiffness: Which joints are painful? What makes the pain worse or better (exercise versus rest)? The time of day the pain gets worse? How long has the patient been in pain? Are there other family members with similar joint pain? Has the patient had recent GI illness, or other symptoms such as eye pain or skin rashes?

The most commonly affected joints are the sacroiliac, lower back vertebrae, the cartilage between the breast bone and the ribs, and the hip and shoulder joints. Pain and stiffness in the lower back and hips that is worse in the morning, neck pain, and fatigue are common early signs of the disease. Symptoms often come and go, with flares followed by periods of remission.

What complications can develop?

The long-term inflammation and joint damage that occurs with progressive, severe AS can cause extra bones to form between vertebrae, leading to fusion of the spine. Spinal fusion makes the spine stiff and inflexible and can be debilitating. AS also can lead to compression fractures due to bone weakness, inflammation of the eye (uveitis), and rarely, heart problems. Stiffness and pain in the joints that connect to the rib can make breathing difficult.

How is ankylosing spondylitis treated?

The goal of treatment is to manage pain, prevent or delay progression of the disease, and prevent spinal deformity and other complications, using a combination of medications, exercise, and surgery. Treatment is most effective if it begins before there is irreversible joint damage. Self-care includes staying active, working to maintain good posture, and using heat or cold to ease pain and inflammation.

In general, AS is associated with a normal life expectancy and many patients are able to live fulfilling, productive lives.

Note: Ankylosing Spondylitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

29 Things Only Someone with Ankylosing Spondylitis Would Understand

1. First of all, learning how to pronounce it is kind of important.

2. Learning to spell it will make you feel very smart.

3. You can make 1 and 2 a whole lot easier by calling it AS.

4. If you have AS, you can try to blame your Uncle Joe, if he has it. It’s sometimes genetic.

5. Remember your grandma telling you, “Stand up straight”? Do it!

6. It’s frequently misdiagnosed, so ask for specific genetic tests for it.

7. Exercise will make you feel better. Remember, “Motion is lotion”!

8. AS will sometimes accompany other disorders — many of which are easier to say and spell.

9. You can use heat or cold for relief. Take your pick.

10. AS sometimes causes breathing problems. So if you’re a smoker, you’ll be sorry.

11. The posture issue is important, not only when standing, but when sleeping or sitting. Lie flat and sit up straight. Always.

12. Don’t just walk. Strut or march, head high, shoulders back. Join a marching band or Fourth of July parade, and smile!

13. Physical therapy is always a good thing for pain, and can be very rewarding, too.

14. Test your range of motion every so often. Throw a ball, stretch, or walk a treadmill.

15. Join a support group. This is sometimes the best therapy.

16. NSAIDs can help with pain relief, and new medicines are being approved every day.

17. If you suspect it’s more than a pulled muscle, follow your instincts. Get help.

18. AS is an equal opportunity pain in the neck. It can occur in children, teens, and adults.

19. AS may change its mind, going from relapses to remission, so learn to outsmart it.

20. Well OK, maybe you can’t quite outsmart it, but you can learn to deal with it.

21. The symptoms can vary from arthritis-type pain to eye problems to heel pain.

22. Know your family history — it should be part of everyone’s health profile.

23. Make sure someone has your back, so to speak. You need this other voice.

24. Stay on top of AS physically, mentally, and spiritually. Be optimistic.

25. Don’t use up all of your energy fighting fatigue. Rest, then move forward.

26. Realize there will be good days and not so good days. Do the very best that you can.

27. Pay attention to potential hazards such as slippery rugs and cracked pavement. Falling can result in a strain, sprain, or fracture.

28. Wear your seatbelt! Protect your body.

29. Make the commitment to exercise and practice good posture. It’s important!

  • There is no funding through the National Institutes of Health (NIH) specifically for AS research. Government-funded research for AS logically could come from the NIH budget for Arthritis ($222 million), but that is a relatively small pool of money for over 100 forms of arthritis (of which AS is just one). There are only *four types of arthritis that receive their own NIH funding – one is Rheumatoid Arthritis ($62 million), a disease that shares a lot of similarities to AS, but which affects fewer people than Spondyloarthritis (the category of diseases AS falls under). Such funding needs to be lobbied for to be implemented, then renewed annually with members of Congress.
  • There is, obviously, no cure for this degenerative disease.
  • So, are we at a tipping point? Certainly we are closer than we used to be, but without more funding, and as long as people think “Dinosaur?” when they hear Ankylosing Spondylitis, we still have a long way to go before becoming less extinct.

    For more information about Ankylosing Spondylitis and what you can do to help, visit the Spondylitis Association of America (USA) or my resource page for other country/region-specific organizations.

    *Edit on April 16, 2017: an earlier version of this article stated that Rheumatoid Arthritis was the only type of arthritis to receive its own NIH funding. This is incorrect – Crohn’s disease, Lupus, Osteoarthritis, and Rheumatoid Arthritis all receive funding through the NIH.

    If you found this post useful in some way, please consider supporting my work with a $3 tip at ko-fi.com/beingcharis. Your support will help me keep the lights on and make me smile.

    As Imagine Dragons was out enjoying its second worldwide tour in support of its sophomore album, “Smoke + Mirrors” in 2015, vocalist Dan Reynolds was quietly suffering ankylosing spondylitis.

    Reynolds, who is now 29, was just 24 years old when he was officially diagnosed with the condition, also known simply as AS. It’s s an inflammatory disease that affects the spine and large joints within the body and during a sold-out show at the Leeds Arena in West Yorkshire, England Reynolds finally shared that diagnosis with fans.

    “I had had enough,” he said during a recent phone interview. “I was in a lot of pain and experiencing a really bad flare up and I wanted to cancel the show, but I didn’t. I just made the decision to share because I was tired of holding on to this.”

    Reynolds said his hips were aching and he was experiencing shooting pains but he addressed it with the crowd and let them know that he wasn’t going to let ankylosing spondylitis dictate how he lived his life any further.

    “The fans were incredibly supportive from day one,” he said. “From there, I made the connection with the Spondylitis Association of America and we put together this plan to raise awareness about this hidden disease.”

    Reynolds has joined the This AS Life campaign, which is a partnership between global healthcare company Novartis and the Spondylitis Association of America, and is now connecting with others with AS via a series of webisodes of “This AS Life Live!” at ThisASLife.com. During the episodes he interviews people living with AS about their specific diets, exercise and pain management regimens.

    “The thing about ankylosing spondylitis is that it’s such a unique disease that everyone’s treatment is fairly different and there’s no one-size-fits all treatment,” Reynolds explained. He has found relief in cleaning up his diet, practicing yoga, lifting weights to build up his core and a specific series of medications prescribed by his rheumatologist.

    “While I was figuring all of that out it was frustrating but in the long run it has been great,” he continued. “I just live a moderate life now. I still have my donuts and my other vices but instead of eating Lucky Charms cereal every day, I might save that just for the weekend.”

    For the first episode of “This AS Life Live!” Reynolds met up with professional chef Helgi Olafson and for future episodes he will interview a doctor, who after her AS diagnosis, decided to become a rheumatologist, and a gamer who discusses the therapy he undergoes to be able to sit for extended periods of time for his work.

    “It’s very uplifting for me to do this,” he said. “These people have found a place of peace and comfort with the disease and they’re still able to do the things they love. It makes me think like, ‘OK, I can get through this, look at what these people are going through’.”

    Years before his official diagnosis, Reynolds said he was experiencing unexplained pains in his ankles, knees and hips and that he had been misdiagnosed by at least four doctors who said he had symptoms of sciatica or a chiropractor that told him he might have a disc slightly out of place. After multiple MRIs he finally saw a rheumatologist to confirm the Ankylosing Spondylitis diagnosis.

    “I was stubborn,” he said. “I didn’t want to believe I had a disease. I was embarrassed because the word disease isn’t something anyone wants to have associated with themselves. I kept it to myself for years and during ‘Smoke + Mirrors,’ it got really dark in a lot of ways because I was in a dark place. I was dealing with depression and the disease because I didn’t have it under control, so speaking out about it helped me realize that I didn’t have to let it rule my life or to be ashamed about it. I needed to be an advocate and use this platform that I’ve been given to raise awareness so that people aren’t getting misdiagnosed time and time again.”

    Reynolds said he’s currently keeping plenty active. He still lives full-time in his hometown of Las Vegas with his wife, Aja Volkman of Nico Vega, and their 4-year-old daughter, Arrow. The couple is also expecting twin daughters in mid-April. Imagine Dragons is gearing up for a brand new release, having put out its first single, “Believer,” in January. Though the band hasn’t announced any proper U.S. tour dates, it will be performing as part of the Zedd-curated ACLU benefit at Staples Center, also featuring Skrillex, Bebe Rexha, Daya, Halsey, Incubus and more, in Los Angeles on April 3.

    The new album, he said still doesn’t have a release date, but will contain much more positive content than its previous effort.

    “The artwork for the single is a picture by this artist named Beeple and it’s of a man kind of in this vast empty space and he’s arriving at a place of color with vibrant lights coming down from the sky,” Reynolds described. “That, to me, symbolized the transition I’ve taken in my own life from ‘Smoke + Mirrors’ to where I am now and that’s a place that’s much more vibrant and colorful. I found a lot of mental and physical health in this last year and did a lot of work to get there. Now I’m just in a place where I can reflect and I’m grateful for what I went through and will continue to go through because it’s a lifelong process.”

    Contact the writer: 714-796-3570 or [email protected]

    Imagine Dragons’ Dan Reynolds Breaks His Silence About Ankylosing Spondylitis

    Reynolds’ medical odyssey is not unusual says rheumatologist Dr. Bauer. “It’s very common that people have seen several doctors before seeing us,” she says. “One of the main reasons is that typically it’s younger people that get and there is a misconception among physicians that young people shouldn’t have serious back problems so the cause of their pain or discomfort must be from a pulled muscle or something like that. Also AS is not that common. So while it’s well-known in the rheumatology world, it’s certainly not something that your average primary care doctor is seeing or thinking about every day.” Dr. Bauer estimates that 20% of her patients have AS.

    Maintenance Takes Work

    Reynolds and his rheumatologist came up with a treatment and maintenance program that would work for him. “Every case of AS is different,” says Reynolds. He follows a rigorous exercise program aimed at building muscle and getting his blood moving more efficiently through his hips. Whether he’s at home in Las Vegas or on tour, Reynolds goes to the gym twice a week for weight training and conditioning. Three times a week, he takes a hot yoga class. “Hot yoga works better for me…because it heats up my body and I feel like I can get a deeper stretch. I have to stretch and activate my joints. And I do a lot of focusing on my hips,” he says.

    His diet isn’t particularly restrictive. He eats in moderation. He doesn’t drink alcohol and has “pretty much eliminated sugar,” he says, though he allows himself a cheat day now and then.

    He’s taking a biologic medication to control the inflammation and pain. “Biologics are what work for me,” he says. Since his diagnosis, he’s gone into remission a couple of times. In fact, he’s now in remission. But AS is unpredictable, he says. “Next year might be a bad year for me. I may have to go back on the biologics.” And he still has flares, episodes of pain “especially in my upper buttocks and hips. And sometimes I get inflammation in my big toe, ankle, or arch. Sometimes it’s in one foot, then the other.”

    Right now, Reynolds is in the “healthiest place he’s been in a long time,” he says. He been off medication for over a year and hasn’t had a major flare up in months.

    Imagine Dragons is about to go on tour. The band is working on their third studio album and 4-year-old Arrow is about to become a big sister twice over. Reynold’s wife is pregnant with twin girls. The babies are due in April.

    Dan Reynolds is feeling good. Still, he hasn’t forgotten what it feels like to be in chronic debilitating pain and to feel as if your life is spiraling down. “That is why I’m so passionate about being a voice for people with AS,” he says. “I have a platform that I can use to shed light on this still hidden disease.” he says. “There are so many people who have it and don’t know they have it and haven’t seen a rheumatologist.”

    “This disease can be really lonely,” he says. “It’s important to find a community where you can speak with people and learn that you can get to a point where the disease won’t keep you from doing what you want to do.” That’s the message of This AS Life Live! And that’s Dan Reynolds’ message, too. “I have a responsibility to speak up for people with AS.”

    Updated on: 10/17/17 View Sources

    Sources:

    Phone interview Dan Reynolds, March 7, 2017

    Phone interview Dr. Erin Bauer, March 7, 2017

    Continue Reading: Understanding Low Back Pain

    Ankylosing spondylitis: Nine possible complications

    Ankylosing spondylitis (AS) is a type of arthritis and triggers painful inflammation in the body, most commonly centered in the back and buttocks. Symptoms can spread as the disorder progresses, with pain and inflammation commonly felt in the pelvis, hips, heels, and other large joints.

    As the condition progresses, unchecked inflammation can contribute to other complications that can affect a person’s life. The effects of these complications can vary from mild to debilitating, and people should speak with a doctor to understand what their options are to help manage all of their symptoms.

    1. Eye problems

    Share on PinterestAs ankylosing spondylitis progresses, unchecked inflammation may occur in the eyes causing painful eyes that may be red or puffy.

    The doctor or rheumatologist will often encourage a person to visit an ophthalmologist regularly to have their eyes checked.

    If inflammation spreads to the eyes, it can cause symptoms, such as swollen, painful eyes that may be red or puffy.

    Some cases can also cause blurred and impaired vision, sensitivity to light, and severe pain.

    There are prescription medications used to treat these symptoms. Wearing dark glasses also can help.

    2. Reduced flexibility

    Damage to the back and joints caused by inflammation can restrict the movement of the muscles and bones as it progresses. For some people, this can result in very limited movement in the spine.

    This reduced flexibility happens when the bones of the lower back fuse together. The fusing of the bones makes it difficult for a person to move and can even cause the back to get stuck in one position. Rare cases may lead to severe disability.

    In many cases, people who follow a regular treatment plan that includes stretching and exercise can help keep their bodies more flexible and remain mobile for longer.

    3. Tiredness

    Caused by inflammatory markers called cytokines that are circulating in the body, tiredness is one of the more common symptoms of AS. Tiredness may get worse because the body using a lot of its energy to keep this inflammation at bay. The effect can leave a person feeling drained of energy.

    Drugs called TNF-a inhibitors that are often prescribed for AS treatment may help lighten the load of the immune system. Regular exercise, such as swimming, can also help relieve fatigue and improve a person’s quality of life.

    4. Osteoporosis

    Osteoporosis is a bone disease that makes the bones less dense than normal. It occurs when the body loses too much bone or makes too little bone. The bones then become weak and are prone to breaks.

    This disease can develop in the spines of people with AS, increasing their risk of spinal injury. Medications are often given to help treat those with both AS and osteoporosis symptoms.

    According to a study in Current Rheumatology Reports, osteoporosis frequently occurs in people with AS, even in the early stages of the disorder. It is the severe inflammation caused by AS that is thought to contribute to osteoporosis.

    Treating AS correctly also seems to help prevent bone loss.

    5. Gastrointestinal disorders

    Share on PinterestInflammation may spread to the intestinal tract causing stomach pain and digestive issues.

    In some cases of AS, inflammation can spread from the spine and hips to the intestinal tract. According to research posted to Current Opinion in Rheumatology, up to 50 percent of AS patients have inflammation in their gut.

    Inflammation in the intestinal tract and bowels can contribute to issues like stomach pain, stomach ulcers, diarrhea, and problems digesting. More severe cases may lead to conditions, such as Crohn’s disease or ulcerative colitis.

    Dietary limitations and regular exercise help to control inflammation, as do certain medications.

    6. Increased risk of heart disease

    People with AS may also be at an increased risk of developing some heart problems. Cardiovascular issues that AS contributes to include:

    • aortitis
    • aortic valve disease
    • conduction problems
    • ischemic heart disease
    • cardiomyopathy

    Taking preventive measures to reduce the risk of cardiovascular symptoms is important for people with AS.

    Regular exercise and eating a healthful diet are part of a good AS treatment plan, and also help reduce the risk of heart diseases. It also helps people to avoid tobacco use and maintain a healthy weight.

    7. Social and employment problems

    While having AS should not have any direct impact on employment, being unable to work for long periods may make gaining or keeping a job more difficult. The disorder can also affect a person’s social and public life as it progresses.

    Over time, AS can affect the type of work a person can do, especially physical labor. Some may be unable to work for long period, while others may not be able to work at all.

    It is important for people with AS to learn to sit correctly and keep good posture. As the symptoms often improve with movement, people should take regular stretch breaks.

    A person’s social life can also be affected by AS. People experiencing chronic pain may be less likely to visit friends, and may find that they are facing symptoms of isolation and depression.

    It is important for people to stay active and keep up with a regular treatment plan to help reduce symptoms and promote feelings of well-being as much as possible.

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