Treatment for Ankylosing Spondylitis?
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Answers:
I am an AS patient, was diagnosed back in 1992 and have been symptomatic since the mid-80s.
One thing I have found about the disease - actually there are a lot of things I have found out about it, but the one that is relevant, perhaps - is that the treatment of AS symptoms and the management of the diseases (and related illnesses) involves tradeoffs. And you have to find the right balance of goodness/badness which will differ by patient.
I assume your doctor is experienced in treating AS patients - if not, you might consider someone with experience until you get your treatment regime set.
I agree with your doctor that going to the biologics may not be appropriate if the AS isn't severe. My rheumatologist is of the same opinion, and goes to the biologics only for his most severely affected patients.
Indocin is the most effective NSAID for AS, and is usually commonly presribed. If that is not one of your six, then make it your next.
I have been treated for the past 14 years with indocin (now high dose) and sulfasalazine. I have tried other NSAIDs, including naproxen and diclofenac and found them to be useless.
This is probably the best description of AS meds you will find.
http://www.spondylitis.org/about/as_med.aspx
Enteropathic arthritis is related to AS but EA patients frequently can't take the NSAIDs because of the same reasons you describe. This is a good summary of EA medications - some overlap, of course, with AS - that you may find useful.
http://www.spondylitis.org/about/ibd_med.aspx
If you haven't already, consider joining the SAA - there is a lot of good information to be found at the site that you won't find (easily, at least) elsewhere.
http://www.spondylitis.org/
Good luck. AS is not an easy disease.
How Common is ankylosing spondylitis?
It affects between 150,000 and 300,000 Canadians (as many as 1 in 100)
Men develop AS three times more often than women, but women have a longer delay in diagnosis.
People of any age can develop AS, but it usually appears between the ages of 15 and 40.
AS is three times more common in men than in women. It typically affects young people, beginning between the ages of 15 and 30. It may affect younger people also, although in very young people it may take a slightly different form, causing pain around the heels, knees, and hips rather than beginning with the spine. Onset after age 40 is uncommon.
What is ankylosing spondylitis?
Ankylosing spondylitis (pronounced ankle-low-zing spond-ill-eye-tiss) is arthritis involving the spine.
It causes pain and stiffness in the back, and also bent posture. This is a result of ongoing swelling and irritation of the spinal joints (vertebrae). This swelling and irritation is called inflammation.
In severe cases, inflammation of the vertebrae can eventually cause them to fuse together leading to severely limited mobility.
Inflammation of the tendons and ligaments that connect and provide support to joints can lead to pain and tenderness in the ribs, shoulder blades, hips, thighs, shins, heels and along the bony points of the spine.
Ankylosing spondylitis (AS) is a chronic inflammatory form of arthritis that affects the spinal joints. The hallmark feature of AS is the involvement of the joints at the base of the spine where the spine joins the pelvis - the sacroiliac (SI) joints.
The disease course is highly variable, and while some individuals have episodes of transient back pain only, others have more chronic severe back pain that leads to differing degrees of spinal stiffness over time. In almost all cases the disease is characterized by acute painful episodes and remissions (periods where the problem settles).
Over the years AS has been known by many different names including poker back, rheumatoid spondylitis, and Marie-Strumpells spondylitis. Since the early 70s with increasing knowledge about the disease, there is almost universal use of the term ankylosing spondylitis (AS).
AS is a member of the family of diseases that attack the spine. These are named spondylarthropathies. In addition to AS, these diseases include Reiter’s syndrome, some cases of psoriatic arthritis and the arthritis of inflammatory bowel disease.
What are the warning signs of ankylosing spondylitis?
Chronic back pain which lasts for many months or years.
Back pain occurring during the night.
Back stiffness lasting for extended periods in the morning or after periods of rest.
Pain and tenderness in the ribs, shoulder blades, hips, thighs, shins, heels and along the bony parts of the spine.
Recurring inflammation in the eyes causing pain, redness, blurred vision, and sensitivity to bright light
The most universal symptom of AS is chronic low back pain that seems to just come on for no apparent reason. The pain is typically worse in the morning. On rising from bed, people with AS may feel stiff and sore and this may take anywhere from 30 minutes to several hours to pass off.
The back pain is usually dull and diffuse rather than sharp and localised. The most common site of pain is deep within the buttock, on one side, or on both sides. In addition to the buttock, there could be pain further up the back, perhaps between the shoulder blades or in the neck.
In a lesser number of individuals, pain does not begin in the spine but starts in a hip, knee or shoulder joint. This can be confusing when there is no back pain present and may initially look like some other form of arthritis.
The pain of AS results from inflammation of the joints. When inflammation is present, the involved area hurts. To avoid the pain there is a natural tendency to stoop forward as extending backwards is more uncomfortable. This reflex can lead to bad posture. Also in bed there is a tendency to curl up, as this may feel more comfortable.
If the inflammation associated with AS continues unchecked, it can produce changes within the spinal column. Small bony outgrowths extend from the edges of the vertebrae and can eventually bridge across from one vertebra to the next. Should this occur, over time it can result in stiffness and immobility between the vertebrae. While there are 24 different spinal vertebrae in the back, stiffness of any two can limit function. Stiffness of more can lead to progressive disability.
While spinal stiffness is to be avoided, even greater potential disability can occur if AS affects the hips, knees or shoulders. The hip joints are quite often involved and can progress to where the joint is damaged, becoming limited in mobility, and painful. The end stage of this hip damage is frequently total hip joint replacement.
Joints Affected
Most commonly the joints in the buttocks, called the sacroiliac joints, are affected. The low back is commonly involved, as is the mid-back (the thoracic spine) and the neck (the cervical spine).
Of the non-spinal joints, the hips are the most commonly involved and to a lesser extent the knees and shoulders. Involvement of the small joints of the hands and feet, wrists and ankles is unusual.
The joints between the ribs and the spine and between the ribs and the breast bone (sternum) can also become painful and stiff. Stiffness of these joints can result in decreased chest expansion.
Iritis (Inflammation of the Iris of the Eye)
Individuals with AS have a much greater likelihood of having episodes of iritis (inflammation of the iris of the eye). This results in the eye being painful and irritated. It is often described as a feeling of having had a handful of sand thrown in the eye. The individual may also be sensitive to bright light. This is usually treated with eye drops.
Aortitis
Although it is relatively uncommon, there is a possibility of inflammation involving the aorta near the heart. If you have AS, your physician may therefore listen to your heart from time to time.
What causes ankylosing spondylitis?
The exact cause is unknown.
Many people with ankylosing spondylitis have other family members with it.
AS tends to run in families. Just as we inherit our hair colour and blood type from our parents, we also inherit our tissue type. The tissue typing system is the Human Lymphocyte Antigen (HLA) system. One of the tissue types, HLA-B27, is found in only 6% of the broad population but occurs in approximately 93% of individuals with AS.
The HLA-B27 tissue type, while not causing AS, does predispose individuals with the B27 tissue type to developing AS. Thus we see AS tending to occur in families. Having the tissue type itself does not mean you will get AS, it simply increases the possibility. Identifying the activating agent that later triggers AS is the focus of much current research. There is discussion among researchers that other genes in the immune system may also lead to the development of AS, perhaps by interacting with some environmental factor.
What can you do about ankylosing spondylitis?
If your doctor thinks you have ankylosing spondylitis, he or she will usually refer you to a rheumatologist (room-a-tol-o-jist). A rheumatologist is a doctor who has received special training in the diagnosis and treatment of problems with joints, muscles and bones.
If your eyes are affected too you could also be referred to an ophthalmologist (off-thal-mol-o-jist).
There is no cure for ankylosing spondylitis but there are things you can do to lessen your pain and maintain your movement and function.
Learn as much as you can about this disease. Speaking with people who are specialists in arthritis care can provide you with the information you need.
At this time, there is no cure for AS. Therefore, treatment is designed to minimize pain and to maintain mobility and function. Establishing the correct diagnosis early is important because the sooner appropriate treatment is started the better the chance of avoiding disability or deformity.
Diagnosis is made from several different features. The history of the onset of pain, the areas of involvement, and the times of the day when pain is worst, are key. In young people the presence of tender points at specific locations around the feet, heels, knees and hips can be indicative of AS. Since AS often affects young, active males, it is sometimes misdiagnosed as mechanical low back strain.
The most classic site of involvement is the sacroiliac (SI) joints on the right and/or left sides in the buttock area. Unfortunately, X-ray evidence of changes in the SI joints may take some time to occur, thus an X-ray taken in the early years of the problem may be negative. Over time the SI joints will usually show changes that can be seen on X-ray. In addition to the SI joint x-ray changes, changes at the edges of some vertebrae may be observed.
There is no blood test that diagnoses AS specifically, but blood tests may be done that could contribute to the picture. Your doctor may choose to perform a blood test called ESR (erythrocyte sedimentation rate) which shows whether or not inflammation is present in the body. This test can help determine if your pain is caused by inflammation or by something else.
Your doctor might also test for the HLA-B27 blood group to help diagnose the disease early, however the presence of HLA-B27 does not directly indicate that you have AS. X-rays may be taken to determine if there is evidence of change to the joints at the bottom of the spine (sacroiliac joints). However, changes in these joints occur slowly over time and may not be present in early stages of the disease.
Often, precise measurements are made of the mobility of the spine and this can also contribute to the diagnosis. By the time spinal joints become markedly stiff, however, the disease has usually been present for some time.
A variety of treatments can help to lessen pain and stiffness and make movement easier. Your active involvement in developing your prescribed treatment plan is essential.
Medicine: Nonsteroidal anti-inflammatory drugs (NSAIDs)
The most common type of medicine used to treat ankylosing spondylitis is nonsteroidal anti-inflammatory drugs (NSAIDs). These drugs help reduce the pain and swelling of the joints and decrease stiffness. However, they do not prevent further joint damage. Two common NSAIDS are Aspirin® and Advil®.
NSAIDs reduce pain when taken at a low dose, and relieve inflammation when taken at a higher dose. NSAIDs such as ASA (Aspirin, Anacin, etc.) and ibuprofen (Motrin IB, Advil, etc.) can be purchased without a prescription. Examples of other NSAIDs that require a prescription include Naprosyn, Relafen, Indocid, Voltaren, Feldene, and Clinoril. The various NSAIDs and Aspirin®, if taken in full doses, usually have the same levels of anti-inflammatory effect. However, different individuals may experience greater relief from one medication than another. Taking more than one NSAID at a time increases the possibility of side effects, particularly stomach problems such as heartburn, ulcers and bleeding. People taking these medications should consider taking something to protect the stomach, such as misoprostol (Cytotec).
Medicine: Disease-modifying anti-rheumatic drugs (DMARDs)
For those with severe disease who have inflamed joints, a drug called sulfasalazine can help manage the symptoms, and better control the disease. Sulfasalazine is one type of a family of medicines called disease-modifying anti-rheumatic drugs (DMARDs).
DMARDs try to stop AS from getting worse. DMARDS take about two to six months before they begin to make a difference in the pain and swelling.
Disease modifying anti-rheumatic drugs (DMARDs) are often prescribed to relieve severe symptoms of ankylosing spondylitis. These medications are designed to prevent AS from getting worse, but do not reverse permanent joint damage. It will usually take several months for DMARDs to make a noticeable improvement in the inflammation.
The most common DMARDs are methotrexate and sulfasalazine. DMARDs are often given along with other medications such as NSAIDs. Common side effects of DMARDs are mouth sores, diarrhea and nausea. These drugs may have effects on pain or swelling in hands or feet but have not been shown to be effective in inflammation in the spine. More serious side effects, monitored through regular blood and urine tests, include liver damage, and excessive lowering of white blood cell count (increasing susceptibility to certain infections), and platelet count (affecting blood clotting).
Medicine: Corticosteroids
Occasionally a cortisone injection into an affected joint or ligament brings short-term relief. Cortisone is a steroid that reduces inflammation and swelling.
For severe pain and inflammation, doctors can inject a powerful anti-inflammatory drug, called a corticosteroid, directly into the affected joint. Cortisone is a steroid that reduces inflammation and swelling. It is a hormone naturally produced by the body. Corticosteroids are man-made drugs that closely resemble cortisone. An injection can provide almost immediate relief for a tender, swollen, and inflamed joint. However, this treatment can only be used periodically because excess corticosteroids can weaken the cartilage and bone.
If your eyes are affected, cortisone eye drops may also be prescribed.
Medicine: Biologic Response Modifiers “Biologics”
Biologics are newer drugs that are becoming available for AS patients that fail to respond to conventional treatment. These drugs block specific hormones which are involved in the inflammatory process.
The newest medical option for treating AS is a class of drugs called biological response modifiers (BRMs), or biologics. Biologics are DMARDs that are made up of genetically modified proteins. They work by blocking specific parts of the immune system, called cytokines, which play a role in ankylosing spondylitis. The most commonly used biologics block one of two important cytokines, either tumor necrosis factor (TNF) or interleukin-1 (IL-1). Biologics are often used to treat rheumatoid arthritis, and recently have been shown to have the potential to slow or even halt the progression of AS in some people. Unlike the other DMARDs, they have been shown to effectively treat the spinal arthritis also associated with AS, as well as the arthritis of the joints of the hands or feet. These drugs work quickly to ease inflammation and can be used in combination with other medications, such as DMARDs.
Depending on the biologic prescribed, they are either given by injection at home or by an intravenous infusion at a clinic. Side effects occasionally seen with these medications include mild skin reactions at the injection site, headaches or dizziness, colds or sinus infections, and nausea or diarrhea. Your doctor will discuss all of the
other side effects of these medications before he or she prescribes them.
Biologics currently available in Canada include Enbrel®, Humira® and Remicade®. At the time of publication, both, Enbrel® and Remicade® have received approval for the indication of ankylosing spondylitis, specifically. Your physician will explain the differences between these medications should he or she prescribe a biologic for AS.
What else should I know about Biologics?
Precaution
Biologics work by suppressing your immune system which can make it slightly harder for you to fight off infections. Please inform your doctor if you are prone to frequent
infections. It is advisable to stop your medication and call your doctor if you develop a fever or if you have or think you have an infection. Before starting biologics, your doctor should check for other infections, such as tuberculosis.
Cost
Biologic treatments are costly, and can range anywhere from $15,000 to $25,000 per year. Depending on the type of insurance coverage you have, treatments may be fully covered or you may be required to share the cost. Generally, provincial plans or private insurance companies will require patients to attempt conventional treatments before they will cover biologics.
The medication that is working for you will be the one that best controls the inflammation and pain. Realize that in most instances it does not result in the pain going away totally. If taking the medication results in a 75% reduction of pain that may be a good result. Work with your rheumatologist to find something that helps most.
The medication that is working for you will be the one that best controls the inflammation and pain. Realize that in most instances it does not result in the pain going away totally. If taking the medication results in a 75% reduction of pain that may be a good result. Work with your rheumatologist to find something that helps most.
A word about Medication Safety
The need to effectively monitor new drugs once they have been approved and introduced into the market has been a key advocacy issue for The Arthritis Societyfor several years. This advocacy helps to ensure that unfavorable side effects are reported, documented, and addressed. For regular updates on medications availablein Canada, visit www.arthritis.ca/tips/medicati...
All medications have potential side effects whether they are taken by themselves or in combination with other herbal, over-the-counter and prescription medications. It is therefore important for patients to discuss the benefits and potential side effects of alltheir medications with their doctor.
Health Canada’s Marketed Health Products Directorate (MHPD) has recently developed a new website, named MedEffect. MedEffect’s goal is to provide centralized access to new safety information about health products in an easy to find, easy to remember location. It also aims to make it as simple and efficient as possible for health professionals and consumers to complete and submit adverse reaction reports. Finally, it helps to build awareness about the importance of submitting adverse reaction reports to identify and communicate potential risks associated with certain drugs or health products. To find out more, visit: www.healthcanada.gc.ca/medeffe... or
call toll-free 1-866-234-2345.
Exercise
Exercise is one of the most important activities in managing ankylosing spondylitis. Exercise helps keep joints moving and reduce pain.
A physical therapist can teach you exercises to do daily. Range of motion exercises reduce stiffness and help keep your joints moving. Strengthening exercises maintain or increase the strength of your back muscles and help you keep an upright posture.
Other activities such as swimming, walking and cross-country skiing also encourage good posture.
Because ankylosing spondylitis causes stiffness in the back you may be more at risk of fracturing your spine. You should be cautious of playing body contact sports, such as rugby or hockey, or doing activities that could involve falling, such as downhill skiing.
Exercise is one of the most important ways to successfully manage AS because it keeps joints moving and reduces pain. It will also help reduce stiffness and strengthen the muscles surrounding joints. Exercise should be done for three major reasons:
to maintain or restore spinal mobility,
to maintain or improve posture,
to maintain chest expansion.
A physical therapist can teach you a program of range of motion exercises for your neck, mid back and low back which should be done daily if you have AS. You won't necessarily do them all daily, but will do some exercise each day to maintain your mobility. You probably should focus with range of motion exercises on particular areas that are troublesome. For example, if your neck is painful and prone to stiffness you should be doing gentle mobility exercises to maintain movement of your neck.
As there is a tendency, because of AS, to stoop forward and to get stiff in this position, strengthening exercises should be done to increase the muscle power of those muscles that keep you upright and erect - the extensors or back muscles. This is contrary to the type of exercises often given to people with the more common back injury. Gentle stretching exercises are important to prevent stiffness and postural changes.
To maintain your chest expansion and rib mobility your physical therapist may also instruct you in breathing exercises.
Choose a time of the day for exercising that works for you. Most people with AS are stiff in the morning so this is probably not a good time to do your exercises. If you hurt take a warm bath prior to exercising.
Generally low impact sports like cycling or swimming are well tolerated and contribute to overall fitness and flexibility.
Heat
Applying heat helps relax aching muscles, and reduces joint pain and soreness. For example, take a hot shower.
Heat applied to an arthritic area can help relax aching muscles, and reduce pain and soreness. Taking a hot shower is a great way to help reduce pain and stiffness in the morning. Heat should not be applied to an already inflamed joint however to avoid making symptoms worse.
Protect Your Joints
Be kind to your body. After doing heavy work, or doing the same task over and over, stop. Slow down by doing an easy task, or by taking a rest.
Use your back, arms and legs in safe ways to avoid stress on joints. For example, carry a heavy load close to your body.
Sleep on a firm supportive mattress and support your neck with special neck supports or pillows.
Avoid the tendency to slump forward or slouch, even though this may feel more comfortable. Be aware of how you are standing or sitting and remind yourself to keep your back straight.
Protecting your joints means using them in ways that avoid excess mechanical stress from daily tasks. Benefits include less pain and greater ease in doing tasks. Three main techniques to protect your joints include:
Pacing, by alternating heavy or repeated tasks with easier tasks or breaks, reduces the stress on painful joints and allows weakened muscles to rest. Pacing and planning also provide you with ways to deal with fatigue.
Positioning joints wisely helps you use them in ways that avoid extra stress. Use larger, stronger joints to carry loads. For example, use a shoulder bag instead of a hand-held one. Also, avoid keeping the same position for a long period of time.
Using assistive devices, such as canes, raised chairs, grip and reaching aids, can help make daily tasks easier. Using grab bars and shower seats in the bathroom can help you to conserve energy and avoid falls.
If you have AS it is very important that you sleep on a firm supportive surface to maintain good spinal alignment for the one third of your day you spend in bed. A saggy mattress or waterbed can permit you to sleep in positions that, over time, might lead to posture that is stooped. Your neck should be supported in as good a position as can be achieved with special neck supports or pillows.
Also be aware of your posture during the day. Pay attention to how you are standing. Look at your habitual work postures. Do you sit upright? If you work at a computer is the monitor on your desk high enough so you are not looking downward? Modify your working positions to better maintain a good posture. Do your best to keep your back straight and avoid the tendency to slump forward, even if it does feel more comfortable. Deal with your pain with medication, exercise, rest and heat but maintain a good posture.
Relaxation
Relaxing the muscles around an inflamed joint reduces pain.
There are many ways to relax.
Developing good relaxation and coping skills can give you a greater feeling of control over your arthritis and a more positive outlook. Try deep breathing exercises. Listen to music or relaxation tapes. Meditate or pray. Another way to relax is to imagine, or visualize a pleasant activity such as lying on the beach, or sitting in front of a fireplace.
Surgery
You and your doctor may consider surgery, if one of your joints becomes badly damaged, or if the pain is too strong.
People with severe, advanced AS may require surgery for badly damaged joints. Surgery usually involves replacing a joint with an artificial joint. This is most commonly used for the end stage of damage to the hip joints, called a total hip joint replacement. Benefits include less pain, better movement and restored function.
Outcomes
While the course of AS varies, most people do well and continue to live normal but sometime modified lives.
Those with very heavy jobs requiring a lot of bending and lifting may have to consider an alternative.
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