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For you or a loved one with ankylosing spondylitis, this section goes into the medical treatment methods and alternative therapies available. Perhaps most importantly, though, it emphasizes the importance of a support network and empowers people with practical things they can do to make it easier to live with the condition.
Ankylosing spondylitis (AS) is a long-term disease that affects the spine and sometimes other large joints. AS attacks the bones in and around your spine. As the body tries to repair itself, new bone forms around the bones in your spine (vertebrae), causing them to eventually fuse together.
Over time, this fusing makes the spine less flexible and can lead to your posture being hunched forward.
Ankylosing spondylitis, like other types of arthritis is chronic– meaning once it starts, it likely persists life-long, with symptoms that usually come and go in waves. Even though scientist don’t yet know what triggers AS or how to cure it, there is an understanding of the types of ankylosing spondylitis symptoms, how to treat symptoms and how the disease progresses.
Ankylosing spondylitis is caused by a malfunction of the immune system, where your immune system mistakenly attacks healthy cells in your own body – in this case in your vertebrae. Scientists are not sure why this happens but the nature of AS classifies it as an autoimmune disease.
Scientists are studying the potential causes:
When the spine is affected by ankylosing spondylitis, it can feel stiff and cause pain. Other joints affected by ankylosing spondylitis may become red, swollen and painful, and feel hot or warm to the touch, this is called inflammation. The joints may also get stiff, just like the spine, especially in the first hours after waking up or after periods of rest.
AS symptoms tend to change over time, and appear differently in each person. People with ankylosing spondylitis will often suffer from a cycle of very painful episodes, called flares, followed by periods when the symptoms disappear, called remissions.
Symptoms can vary. For example, pain can be mild or extreme, periods during which the spine is stiff can be short or very long, and the time between flares can range from weeks to years.
If inflammation from ankylosing spondylitis is left untreated, it can eventually lead to a fused spine, joint deformities, and severe stiffness that make daily activities difficult. Fortunately, there are many ways to treat ankylosing spondylitis and prevent damage before it happens.
Ankylosing spondylitis usually starts in the sacroiliac joints, which connect the spine and the pelvis together. In fact, the telltale sign that joint inflammation is caused by AS, and not another type of arthritis, is chronic lower back pain that is worse in the morning, feels better after exercising, and seems to come and go in flares for no clear reason. The pain can fluctuate from side to side in the sacroiliac joint.
The inflammation can then spread upwards to other parts of the spine and, in more severe cases, involves the entire spine. Even though new bone forms on portions of the spine affected by ankylosing spondylitis, the existing bones in the vertebrae may become thin. This increases the risk of fractures.
AS can also affect larger joints, such as the hips and shoulders.
AS sometimes also affects entheses in the body, the places where ligaments and tendons join to the bone. One or a few joints only may swell up, for no reason.
These are common spots where entheses are involved in ankylosing spondylitis:
● Back of the heels
● Underneath the bottom of the feet
● On the outside of the hips
● Where the breastbone attaches to the ribs
In women, ankylosing spondylitis usually impacts the spine, neck and joints in the legs and feet; while in men, the spine, hips and shoulders are commonly targeted. When AS starts in children, the first symptoms are usually in the feet, knees and hips, with the spine being spared until adolescence.
In some people, ankylosing spondylitis may also affect the eyes. In rare cases, the linings around the heart and lungs can also be involved.
AS inflammation sometimes also brings on flu-like symptoms:
● Feeling extremely tired
● Feeling generally ill
● Having a low fever
● Losing your appetite
● Losing weight
No man is an island: in other words, it is not helpful to try to live with ankylosing spondylitis by yourself. Your friends and family can help, along with your treatment team of healthcare professionals.
Living with a chronic disease like AS can make you feel isolated – especially when you have to adapt or change your daily routine, see your healthcare practitioners and learn medical terms. But you don’t need to do it alone.
When you have ankylosing spondylitis, it’s invaluable to keep the lines of communication open with your family, friends and coworkers: they can’t understand what it’s like to live with AS if you don’t talk openly about it.
Here are some tips and helpful insights we’ve learned from patients with AS:
Always be open and honest about your AS. It’s the only way people can help you. Remember, if you’ve ever told a friend or family member, “You don’t know what it’s like,” that’s maybe because you haven’t told them.
If you have ankylosing spondylitis, there are many things you can do to ease your symptoms. Moderate exercise, healthy eating and relaxation techniques are all important factors in caring for your spine and joints. Ask your healthcare professional if you’re unsure.
Please be sure to consult with your physician.
Exercise doesn’t make stiff and painful joints feel worse. In fact, a bit of moderate exercise may be just the trick for relieving spine and joint tension. And physical activity strengthens muscles and tissues, so a weakened or damaged spine or joints are better supported.
To keep exercising fun:
● Know your limits and trust your instincts on the amount of exercise your joints can handle
● Start slowly if you haven’t been active for a while
● Don’t overwork your muscles
Try smooth, low-impact activities like stretching, swimming, tai chi or light yoga. Always make sure that you don’t overdo it. For extra motivation, you can ask a professional to design a fitness regimen. Be sure to tell them about your condition, so the routine will be right for you.
Imagine the extra strain it would put on your spine and joints to carry around a heavy backpack and suitcases all day long. Extra body weight can have the same damaging effect.
If you have ankylosing spondylitis, maintaining a healthy weight is a main reason to watch what you eat. Losing just a few pounds can mean big stress relief on your spine, knees and other joints. Choose nutrient-packed foods for optimal health and energy.
Protect your spine and joints from damage by making a few changes to daily activities.
How to protect your spine and hips:
How to protect all your joints:
Surgery is not needed in most people with ankylosing spondylitis, but in severe cases, it can return function to a badly damaged joint or restore posture in the spine and neck. Back surgery is reserved for only the most severe cases, where deformities prevent almost all normal movement. People who do undergo surgery usually benefit from physiotherapy and rehabilitation afterwards.
Please be sure to consult with your physician.
Ankylosing spondylitis medications are divided into two general categories: those that relieve symptoms and inflammation and those that relieve symptoms and change progression of the disease. Your doctor can explain the differences, benefits and side effects of each. You will likely try different therapies or combinations before finding the best prolonged pain relief.
Please be sure to consult with your physician.
Four types of medication are used to treat AS:
Non-steroidal anti-inflammatory drugs (NSAIDs) are a class of medications that can be used to treat the pain and inflammation of ankylosing spondylitis. NSAIDs does not control the disease, they only treat its symptoms. Therefore, they are only taken on an as-needed basis.
Your doctor may recommend a NSAID to reduce swelling and relieve pain, tenderness, and stiffness in your back and joints. You may start to see the benefits within a few weeks.
There are many NSAIDs available, including prescription and non-prescription types. All NSAIDs have an anti-inflammatory effect. Each person reacts differently to different drugs, so you may find that one NSAID brings you more relief than another.
The most common side effects associated with NSAID use are indigestion, heartburn and stomach and abdominal pain. They can also alter the protective lining of the stomach and gut, making you susceptible to ulcers and bleeding, so you should avoid taking more than two different kinds of NSAIDs together. COX-2 inhibitors are custom-designed types of NSAIDs that reduce the risk of ulcers and bleeding. People with heart disease, or a history of stroke or chest pain, should not take NSAIDs. Discuss the use of NSAIDs with your doctor if you have kidney, stomach or heart problems.
The body naturally produces cortisone and other steroids to regulate inflammation in the body. Physicians use corticosteroids as fast-working medication for particularly severe and painful symptoms of ankylosing spondylitis. They give the same type of relief as NSAIDs, but are stronger, and are not meant for chronic or long-term use. They can have severe side effects, so they are usually taken for limited periods of time, or used to provide relief while waiting for slower acting medications to take effect.
Corticosteroids can be injected directly into a joint or taken orally. Some of the side effects of oral corticosteroids include facial rounding, fluid retention, fatty deposits in arms, legs or back, increased appetite and weight gain, difficulty sleeping, acne, hair growth, blurry vision, an increase in blood pressure, an increase in blood sugar levels, and mood swings. As the dosage is decreased or stopped, these side effects disappear.
Disease-modifying anti-rheumatic drugs (DMARDs) are prescription medications that are usually only used when the ankylosing spondylitis shows peripheral involvement in other areas of the body, as they do not seem to have any impact on the spine. DMARDs can take the time to work – sometimes weeks or months. During this time, you might also be prescribed another medication to help control symptoms.
Your doctor will recommend a therapy that is best suited to your type and stage of ankylosing spondylitis, other medical problems, and medications.
Common side effects of DMARDs include nausea, diarrhea, upset stomach, dizziness, increased risk of infection and liver problems. Regular blood work is needed to monitor blood cell counts and liver function.
Biologic response modifiers, or biologics for short, are medications specifically designed to target your body’s immune system. Like DMARDs, biologics are used to slow the progression of ankylosing spondylitis, help prevent damage to the back and joints, and ease joint swelling, tenderness and pain.
Biologics can take some time to work. Some people notice the effects of the medication quickly (within a week), while it takes others months to feel the effects. Biologics are often combined with other medications to treat AS, such as DMARDs. They are also prescribed when other AS therapies aren’t effective.
Common side effects with biologics include mild skin reactions at the injection site, nausea, abdominal pain and headaches. Rarely, people who take biologics may develop serious infections, lupus-like reactions, nervous system diseases and cancer. You should not take a biologic if you are pregnant or nursing or have a history of multiple sclerosis or cancer. Tell your doctor if you have a history of tuberculosis, hepatitis B or recurrent infections.
Biologic are administered in two ways: infusion or injection. Your doctor can provide you with information and help make the right choice for you.