About ankylosing spondylitis
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.
What is ankylosing spondylitis?
Ankylosing spondylitis (AS) is a long-term disease that affects the spine and, in some cases, 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 we don’t yet know what triggers AS or how to cure it, we do know the types of ankylosing spondylitis symptoms, how to treat symptoms, and how the disease progresses.
What causes ankylosing spondylitis?
Inflammation is a natural process that your body normally uses to protect itself from harm. Inflammation is behind the pain and swelling you feel from:
Ankylosing spondylitis is caused by a malfunction of the immune system, in which 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 puts it in the category of “autoimmune diseases”.
Scientists are studying the potential causes:
- Genetics: some people have genes that set them up to develop ankylosing spondylitis - although carrying these genes is not enough to develop the disease
- Triggering event: the condition is set off when the body reacts to a stressful period in life, an infection, or something else in the environment
- Family link: someone who has a relative with AS is also at higher risk of developing the disease
- Gender: ankylosing spondylitis affects men and women equally
- Ankylosing spondylitis (AS) is inflammatory arthritis that mainly affects the spine or back.1
- The first sign of AS is inflammation in the lower spine.1,2
- AS affects between 150,000 and 300,000 Canadians.2
- AS is three times more likely in men than in women.2
- AS usually starts between the ages of 15 and 30.2
- AS can still happen at any age, but rarely over the age of 40.3
- At times, people live with mild AS for many years without knowing they have it.2
- When children develop AS, the first symptoms usually appear in the heel, knee, hip, or shoulder.1
What are the effects of ankylosing spondylitis?
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: 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 makes 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 apparent 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:
AS sometimes also affects “entheses” in the body, the places where ligaments and tendons join to 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 breast bone attaches to 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 heel, knees, hips and shoulders, 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.
Are there other symptoms?
AS inflammation sometimes also brings on flu-like symptoms:
- Feeling extremely tired
- Feeling generally ill
- Having a low fever
- Losing your appetite
- Losing weight
Support means everything
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 health care 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 health care 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:
- Ask those closest to you to learn about your condition. This way they’ll understand your symptoms, or even go with you to your appointments. They can read this or other Web sites, or consult reliable sources like libraries, or the Arthritis Society.
- Let them know you need their support. This could be just a sympathetic ear when you need to talk. If there are times when you are more limited physically, be sure to tell them that inflammatory diseases always have good and bad days.
- 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.
When we stop doing the things we love, our mood drops, pain feels more intense, and it becomes even harder to get motivated. Keeping fun in your life is absolutely essential - make it a top priority. It boosts your mood, your relationships, and your energy level. Find one activity you love - even a small one - that you can add to each week without fail, and one you can add to each day. Once they become routine, you'll start feeling better and will want to add more.
Ankylosing spondylitis is different for every patient, and treatment must be tailored for each individual case. The key is to communicate regularly with your doctor about your progress and the effects of your treatment, and to follow your treatment instructions every day, as medication can take time to work. If you feel there’s a problem with your regimen, or are experiencing any side effects, talk to your doctor right away about trying alternative methods. Don't hesitate to ask questions and get involved in decision-making regarding your health. And keep in mind there are many options available to you, so if one approach isn’t working, another one just might.
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 health care professional if you’re unsure.
Exercise doesn’t make stiff and painful joints feel worse. In fact, a bit of moderate exercise may be just the trick to 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 the 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:
- Avoid movements that put stress on your spine, such as bending forward from the waist
- When climbing stairs, use the handrail for support and go up or down sideways, facing the rail, when possible
- To help keep good alignment in your spine, sleep on a firm mattress and use special neck supports or pillows
- Be conscious of good posture during the day - this will help avoid undue stress on your spine
- Use a computer wisely: make sure your neck, wrists and lower back are in relaxed and neutral positions. Take a break and stand up every half hour or so
How to protect all your joints:
- Balance activity and rest: neither sitting nor standing all day is good for you
- Avoid heavy lifting if you can. If you do need to move heavy loads, consider pushing instead of pulling, sliding instead of lifting, or using a pushcart (e.g., bringing groceries from the car to the house)
- Pick a raised seat to decrease stress on hip and knee joints
- Lift big pans and other heavy objects with two hands, and carry them close to your body
- Use a reacher to pick up items from the ground, or a cane to decrease pressure on a knee or hip
- Protect your knuckles - use gadgets to twist open lids, enlarge the grip on tools and kitchen utensils, and push doors open with your whole body instead of just your fingers
One of the symptoms of ankylosing spondylitis is extreme tiredness, and dealing with pain can be exhausting. Even so, it’s important to keep up some level of activity and movement. Prevent strain by alternating between demanding activities and easier ones. The key is to rest and take breaks, and listen to what your body is telling you.
Stress can lead to an increase in blood pressure, interrupt sleep, and play a role in the intensity of ankylosing spondylitis symptoms. The first step is identifying stress triggers - then developing relaxation and coping skills to improve your overall wellbeing and give you a greater sense of control over your AS.
Eye inflammation is common, with about 30 per cent of people with AS developing some form of eye inflammation, called “uveitis” or “iritis”, at least once in their lifetime. Inflammation often starts quickly, usually in only one eye. Your eye and the surrounding area may become red and hurt or feel irritated, and you may have headaches, blurred vision or sensitivity to light. You must see an ophthalmologist (eye specialist) right away - prescription eye drops may help stop the attack and prevent potential loss of vision.
Complementary therapy options
For some people with ankylosing spondylitis, complementary and alternative therapies - treatments that fall outside the scope of traditional western medicine - can sometimes work very well for pain relief. Ask your health care professional about alternative therapies.
Both heat and cold can help reduce arthritis pain, but in the case of ankylosing spondylitis, you should probably use heat most times. Cold can make a joint feel stiffer, so it should be avoided on joints affected by AS when they are stiff to begin with.
- Heat: A stiff back and joints can benefit from a bit of heat, including first thing in the morning. Take a warm shower or hot bath, or apply warm compresses to help relax the muscles and relieve stiffness and pain in your joints and back.
- Avoid heat on swollen joints: Heat should never be applied directly to joints that are swollen or already warm. This will make symptoms worse.
- Cold: For swollen joints - if they don’t feel stiff - applying a cold compress (or a plastic bag of ice cubes wrapped in a towel) to hot and inflamed joints for about 15 minutes can help constrict blood flow, and decrease the pain and swelling. Cold can make a joint feel stiffer, however, so don’t use it on already stiff joints.
Some people add natural relief therapies to their medical treatments for ankylosing spondylitis, such as acupuncture, Swedish or “classic” massage therapy, vitamin or mineral supplementation (e.g. glucosamine), or biofeedback (with or without hypnosis). Always first discuss these treatment options with your physician, and be sure to tell any alternative health specialist about your condition in order to avoid injury.
Ankylosing spondylitis medications are divided into two general categories: those that relieve symptoms and inflammation, and those that relieve symptoms and modify 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.
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 do not control the disease, they only treat its symptoms. Therefore, they are only taken on an as-needed basis.
Your doctor may recommend an NSAID to reduce swelling and relieve pain, tenderness, and stiffness in your back and joints. You may start to see 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 minimize 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 provide 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, increase in blood pressure, 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 time to work - sometimes weeks or months. During this time, you might also be prescribed other 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.
Biologics are administered in two ways: infusion or injection. Your doctor can provide you with information and help make the right choice for you.
Understanding biologic and biosimilar medications
Most people are familiar with conventional medications such as pain relievers. These medications are made from chemicals (chemically synthesized).
Some of you may also have heard about biological or “biologic” medications which are used to treat serious illnesses, such as cancer, inflammatory bowel disease, psoriasis and rheumatoid arthritis. Biologics are special medications created using the biologic processes within living cells.
Conventional medicines and biologic medicines have important differences.
|Conventional medicines||Biologic medicines|
|Made from chemicals||Created in living cells|
|Generally small molecules||Complex large molecules|
Some history on biologics...
It is common knowledge that when the patent expires on a conventional medication, other companies are allowed to make copies called generics. Although the active ingredient in a generic is exactly the same as the active ingredient in the original conventional medication, non-medicinal ingredients, like fillers and colouring, may be different.
When the patent on a biologic medication expires, other companies are allowed to make copies. However, since it is impossible to make exact copies of biologic medications because of the way they are made, the copies are not called generics or even biogenerics. The correct term is biosimilar since it can only be similar and not identical to the original. In Canada, the official term for a biosimilar medication is Subsequent Entry Biologic or SEB.
Is a biosimilar a generic version of the original biologic drug?
No, biosimilars are similar to, but not identical to the original biologic drug. This is because the group of cells used to produce the drugs (the cell line), the actual drug molecule and the manufacturing process are different.
In Canada, manufacturers of biosimilars are required to show Health Canada that their product is similar to the original biologic and that the benefits of their product outweigh the risks. SEBs must have a label that is different from the original biologic medication.
Does the difference between a biosimilar and the original biologic matter to me and my care?
Yes, original biologics and biosimilars may act differently in your body and could have different side effects.
Since original biologics and the biosimilar versions are not identical, it’s important that you review your prescription with your doctor so you know which one is being prescribed.
Health Canada does not support automatic substitution of a biosimilar for an original biologic at the pharmacy.
For more information about biosimilar medicines, visit:
Alliance for Safe Biologic Medicines (USA) www.safebiologics.org
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 note that the information on this Web site should not be used as a substitute for seeking medical advice or treatment from a physician. You should not use this information to diagnose or treat a medical condition or health problem. Speak to your health care provider if you have any questions about your medical condition, symptoms or treatment options. The information found on this Web site can be referenced at www.arthritis.ca.
CSA is a national association created to advocate for and support those suffering from ankylosing spondylitis, psoriatic arthritis, and associated spondyloarthritis diseases.
The Arthritis Society is a national health charity, fueled by donors and volunteers, with a vision to live in a world where people are free from the devastating effects that arthritis has on lives.
CAPA uses the power of information, research, and communication to help people living with arthritis find their voice and support others.