Ankylosing Spondylitis, or AS, is an autoimmune disease. This illness is caused by a person’s immune system becoming over-active and malfunctioning. In a healthy patient, the immune system serves as the body’s main line of defense against infections (viral, fungal, and bacterial). Autoimmune diseases develop when the immune system attacks the body’s healthy tissues. Although there are many theories, it is not clear why the immune system becomes overactive. Similarly, it is not clear what causes the immune system to attack the body.

Because car accidents can vary significantly, the risk of injury to anyone with AS involved in a motor vehicle accident also varies. However, due to the nature of the disease, people with AS are more likely to sustain serious injuries and experience complications. The advancement of the disease itself can lead to much more severe outcomes. For example, anyone with spinal or rib fusion is at increased risk of sustaining a spinal fracture from a car wreck. Because the fusion results from bone growth, the spines of these individuals no longer flex and bend, reducing their ability to absorb the shock of force from sudden jarring movements. This can lead to increased cervical strain. In persons with AS-related osteoporosis, the risk for fractures significantly increases during a motor vehicle accident. For AS patients who experience nerve impingement or spinal stenosis, the additional inflammation caused by an accident can be excruciating, reducing function in the immediate aftermath of the car crash. A shift or fracture of the bone growth can cause further nerve impingement, requiring surgery or leading to chronic pain. The already inflamed tissues of the AS spine are more susceptible to ruptured and herniated disks, causing further nerve impingement and requiring invasive treatments and surgeries to restore function and reduce pain. 

The increased inflammation component of AS and the likelihood of infection mean less favorable outcomes after surgery. Even in auto collisions with no severe trauma to the spine or joints, AS patients experience slower healing time, increased swelling and stiffness, and take longer to return to full function because of increased inflammatory response. Additionally, any injury can trigger the immune system to attack the injury site. For example, a broken wrist might not affect a person without AS once the wound is healed. Patients with AS are likely to develop chronic inflammation in the wrist, leading to swelling, pain, reduced range of motion, limited function, permanent joint damage, and risk of developing chronic pain. Injuries caused by an accident can become flare-up sites for the rest of the individual’s life. Physical and emotional trauma trigger flare-ups that limit function and often require more dangerous medications, such as Prednisone and immunosuppressive drugs, with potentially dangerous side effects and can cause lasting damage to joints. Any trip to an emergency room can endanger the life of a person with AS.  

Because AS is generally treated with immunosuppressive medications, low-dose chemotherapy, and steroids (both of which work by suppressing the immune system), any illness can be more dangerous. Emergency rooms are often packed with people who have COVID or the flu. People with AS are significantly more likely to develop a severe form of COVID than healthy individuals of the same age. All AS patients must wear an N95 mask in hospital waiting rooms and exam rooms and maintain social distance from others indoors.  

AS does tend to run in families and is often called a hereditary disease, although this is not 100% accurate. Approximately 85% to 95% of people who develop AS possess a rare gene called HLA-B27. However, not all people who are diagnosed with AS carry this gene. It is thought that these cases develop because of environmental factors. Infections, trauma (emotional and physical), chronic stress, other medical conditions, and medications have been linked to the development of autoimmune diseases.

Additionally, not all people who have HLA-B27 develop AS. So far, medical science has not been able to identify why some carriers of the gene develop AS while others never do. It is possible that an environmental factor somehow triggers gene expression, leading to disease activation.

In most cases, AS tends to attack the spine, sacroiliac joints (where the spine meets the hips), and the hips, but it can attack any joint or organ in the body. When the immune system attacks a joint or tissue, it does so by releasing a large number of white blood cells into the area. A normally functioning immune system protects injured regions (such as a banged elbow) and prevents invaders from entering the body (such as bacteria). This also causes fluid to accumulate in the area affected, leading to swelling. Symptoms of inflammation include hot/swollen joints, redness around joints, stiffness, and pain. Since many of the joints most affected by AS are large joints, which are challenging to see, most patients identify pain or stiffness as the first symptom noted. This typically occurs in the spine and sacroiliac joints. Individuals with AS often experience chronic inflammation, which can be painful and causes permanent damage to several systems within the body. Additional symptoms of AS include fatigue, brain fog, inflamed glands, and reoccurring low-grade fever (typically around 100-101 degrees Fahrenheit).

Prolonged inflammation around the spine can cause abnormal bone growth. One hallmark of advanced or aggressive AS is a condition referred to as bamboo spine. This is a horrific and often completely irreversible result of the disease. The bamboo spine develops when there is so much abnormal bone growth between the vertebrae that they fuse together. This condition gets its name because spinal x-rays of a person with this type of fusion look like a bamboo stalk. Fusion can be painful, especially because the spine does not permanently fuse in a straight line. It can connect in a way that produces abnormal bends and curves in the spine, locking the patient into a constantly uncomfortable posture. This can often lead to a hunchbacked appearance and limit patients’ ability to completely fill their lungs. In some cases, the ribs will also grow abnormal bone and fuse together, further restricting lung function.

Additionally, abnormal bone growth can become so severe that it impinges nerves at their exit points from the spine. Imagine a nerve being constantly squeezed by a bone spur or an outcropping of abnormal bone growth growing larger. This is extraordinarily painful and can cause permanent nerve damage, loss of function, weakness, and chronic pain. AS can also cause abnormal bone growth within the spinal canal itself. The spinal canal is the hollow space through which the nerve cord passes. This condition is called spinal stenosis and can devastate a patient’s well-being. When there is abnormal bone growth within the canal, the space through which the nerve cord passes grows smaller and smaller. This puts extraordinary pressure on the nerve cord, causing unbelievable pain. Occasionally this condition is treatable, but it depends upon the area of the spine affected and how advanced the bone growth is. Even when spinal stenosis can be surgically corrected or improved, the procedures entail a serious risk of complications, including damage to nerves and stroke in the spinal cord. No surgery can restore the spine (or any joint) to its previous healthy condition. This means that outcomes can reduce pain and give the patient more mobility, but there will likely be continuing chronic pain and nerve issues. When spinal stenosis is not treatable, it can often result in the patient losing mobility and function. In most severe cases, patients can become wheelchair-bound.

Diagnosing AS can be tricky, and often patients will experience misdiagnosis multiple times, for years, before attaining a correct one. Anyone experiencing the symptoms of AS should request a referral to a rheumatologist. A General Practitioner cannot diagnose Ankylosing Spondylitis, and most do not even know what the disease is. In fact, it is such a rare disease that many family practice doctors mistake the symptoms for injuries and unintentionally send patients on a medical wild goose chase. That is why the patient must request a referral to a specialist. The rheumatologist often orders X-rays, MRIs, blood tests, and even genetic tests. A thorough rheumatologist will also perform a range of motion test on as many of the patient’s joints as possible.

Patients must request these tests if they are not ordered, as many health care systems are reluctant to perform them given the costs involved. Women are more likely to experience misdiagnosis than men. AS was considered a male disease because more men develop spinal fusions than women. Fusions show up on X-rays, but inflammation does not. The development of technology that can provide images of soft tissues (such as MRIs) has shown that while women are less likely to develop spinal changes, they are more prone to inflammation. Only recently have rheumatologists started utilizing soft tissue imaging in diagnosis and treatment. This has led to an increased number of women being diagnosed. However, it is essential to note that many rheumatologists graduated from medical school before these discoveries were made, and medical bias exists within the rheumatologist profession. A significant portion of doctors continues to view AS as a male disease. This disease only occurs within individuals with the HLA-B27 gene and will only provide a diagnosis if some amount of spinal fusion already exists. It is counterintuitive (and not in the patient’s best interests) to wait for irreversible spine damage to diagnose a degenerative disease, for which early treatment is vital to preventing damage and loss of function. Many doctors and health care systems (Kaiser Permanente, in particular) insist upon this outdated method of diagnosis, even though it has been proven detrimental to significant numbers of patients, especially those females. Therefore, it is critical that any individual who suspects they have AS seek multiple second opinions and advocate fiercely for testing. Many patients will see 4 or more physicians before receiving a correct diagnosis. It often takes years to receive a proper diagnosis. Journaling pain and symptoms throughout the day and their impact on the individual’s living activities can help give doctors a complete picture of the severity of the illness.

AS is incurable, but there are treatments to reduce pain and inflammation and slow the damage it causes. Because AS causes joint changes and can affect organs, early diagnosis and treatment are vital to slow disease progression. Unfortunately, many medications used to treat AS have potentially serious side effects, and finding the correct medications for each patient can take time. Medications used to treat AS include non-steroidal anti-inflammatory drugs (NSAIDs), corticosteroids (Prednisone), disease-modifying antirheumatic drugs, or DMARDs (methotrexate, sulfasalazine, cyclosporine, hydroxychloroquine) and biologics. Often a cocktail of these medications is required to manage the disease. These medications work in various ways to reduce inflammation within the body. Some are only necessary for flare-ups (episodes of severe inflammation), while others must be taken regularly to mitigate the daily effects of AS. It is important to note that mild side effects from these medications of decrease with time as the patient’s body adjusts to the medicine. Adverse side effects (such as allergic reactions) are rare but require immediate medical attention. Patients who have trouble breathing after taking medication should proceed to an emergency room. Any side effects should be reported to the patient’s physician for monitoring. Regular blood testing is standard for people with AS, especially DMARDs and biologics. Doctors use these tests to monitor inflammation within the body and blood cell count and to check for changes in organ function. Anyone on immunosuppressive treatment will be tested annually for tuberculosis.

Doctors used to prescribe NSAIDs (many of which are similar to ibuprofen) as a daily maintenance medication. However, studies have shown that taking NSAIDs daily for prolonged periods (years) can lead to stomach ulcers and increase the risk of stroke, heart attack, and kidney issues. Therefore, if possible, it is best to use NSAIDs only during flare-ups. Another medication that should only be utilized during acute periods is corticosteroid Prednisone. Although immensely helpful in reducing swelling and inflammation, this medication entails serious risks when used often or for longer than 3 months. These include increased blood sugar levels, which can lead to diabetes, loss of bone density (increasing likelihood of osteoporosis), stomach ulcers, glaucoma (increased pressure within the eye), and cataracts. The short-term side effects of Prednisone, while frustrating, are not permanent. These include difficulty sleeping, mood swings, increased appetite (often leading to weight gain), increased thirst, and suppression of the immune system. These symptoms stop when the patient is no longer on Prednisone.

DMARDs work by making gradual changes within the body to reduce inflammation by modulating the overactive aspect of the immune system over time. Because of this, they often result in a suppressed immune system. This can increase the risk of serious infections. Some of these medications can increase the risk of liver toxicity. Regular blood testing is necessary to monitor liver function. The gold standard among DMARDs is methotrexate. Originally used as a chemotherapy treatment for leukemia, tiny doses of this medication have been found to significantly reduce inflammation and improve function. Methotrexate can be taken orally or by injection under the skin. The most common side effects are stomach upset, increased hair shedding, and sunlight sensitivity. It is essential to wear sunscreen, drink lots of water and take folic acid when on this medication (your doctor will tell you the proper dose of folic acid to consume). Long-term, methotrexate can increase the risk of some cancers. Many patients tolerate this medication well and find that it helps relieve their symptoms, reduce pain, and improve function. This medication can be taken orally, in pill form, or as an injection. The injectable treatment course tends to result in less nausea as it bypasses the gastrointestinal tract.

Another DMARD that is important to discuss since the COVID-19 Pandemic has increased the risk of being immune-compromised is hydroxychloroquine. Although not clinically shown to provide any benefit against COVID-19, hydroxychloroquine has effectively reduced the chronic inflammation associated with AS. It can take a long time (3 months) for patients to see the benefits of this medication after they begin treatment. Still, it significantly reduces pain, swelling, and stiffness after the initial time investment. This medication does suppress the immune system but is considered to have less of a suppressive effect than methotrexate and many other DMARDs, making it a better choice for many who work with large numbers of people and are concerned about being exposed to COVID. Hydroxychloroquine side effects include dizziness, headache, nausea, vomiting, appetite changes, increased hair loss, low blood sugar, anxiety, and sun sensitivity. Although rare, this medication can affect vision and causes changes in heart rhythm. People with cardiovascular disease, hypoglycemia, and diabetes should discuss with their doctor the risks of this medication.

The most cutting-edge category of medication used to treat AS is referred to as biologics. The most common biologics used to treat AS include Enbrel, Humira, Remicade, Cimzia, Inflectra, Taltz, Xeljanz, Cosentyx, Simponi, Renflexis, Avsola, and Rinvoq. Although technically a type of DMARD, biologics are also monoclonal antibody treatments. They are grown in human cells and genetically engineered to function within the body’s immune system. These medications suppress a specific aspect of the immune system thought to cause inflammation within the body, thus significantly reducing inflammation, joint damage, and abnormal bone growth. Short-term, mild side effects of these medications can include fatigue, headache, and increased respiratory infections, such as sinus infections. Many patients do not experience side effects from biologics. Long-term, it is possible that biologics can slightly increase the risk of certain cancers, although any medication that suppresses the immune system can carry this risk. Inflammation itself has also been shown to increase cancer risk.

Because AS often results in chronic pain, it was common practice to prescribe opioid painkillers. Unfortunately, this led to many people becoming tissue dependent on these medications. Not only can that cause severe withdrawal symptoms if a dose is missed, but there is also evidence that long-term use of opiates suppresses organ function and can eventually cause organ damage. It also reduces a patient’s ability to recover from infections. Additionally, data suggests that opiates don’t improve chronic pain over time. This medication is best for acute periods of distress or after surgery. If the patient’s pain is so severe that opiates are the only treatment option, patients should ask their doctor about the possibility of a pain pump. This implantable device delivers micro-doses of pain medication directly into the site of pain (typically the spine). Many patients report relief from their pain from CBD and cannabis products. It is important to note that patients must avoid smoking due to the long-term risk of reduced lung capacity in AS. All smoke is carcinogenic (even marijuana smoke) and damages lung tissue which, over time, decreases lung volume. Therefore, patients interested in using cannabis as a pain management strategy should use topical treatments or edible products rather than smoking.

It is important to note that unchecked inflammation has been linked to changes in DNA, leading to cancer. Although the medications used to treat AS may seem intimidating, if a patient doesn’t want their disease to shorten their lifespan, significantly reduce their quality of life, or cause disabling joint changes, medications are vital and unavoidable. Anyone doubting the necessity of these medications needs only look at patient x-rays from before drugs existed to understand the importance of treatment. Though espoused by plenty of naturopaths and lifestyle influencers (who do not even possess medical degrees), holistic therapies have not been shown to have any efficacy in slowing or preventing the progression of this lethal, degenerative disease. Common sense indicates that if AS were treatable with diet and exercise alone, doctors would recommend lifestyle changes rather than prescribing Prednisone, low-dose chemotherapy, and biologic medications, which all have potentially serious side effects. Doctors only prescribe medications when they believe the risks of the disease outweigh the potential risks of medicines. Anyone with AS must find a rheumatologist who listens to them and whom they can trust. Any person with a medical condition should seek advice from medical specialists who have been to medical school and are legally licensed to treat their specific illness. Exercise and diet can sometimes impact AS symptoms, but they are insufficient to treat this disease and prevent damage. Many patients have learned this hard after naturopathic and dietary “treatments” lead to irreversible joint and organ damage. Yes, medications can be challenging but not compared to an untreated, advanced case of AS, leading to patients having failed joints, chronic pain, joint replacement surgeries, and being permanently wheelchair-bound. It is essential that patients only take medical advice from medical professionals who possess legitimate credentials.

People with autoimmune diseases often have high comorbidity with other inflammatory disorders. This can include digestive tract inflammation, causing conditions such as Irritable Bowel Disease, Crohn’s Disease, and Ulcerative Colitis. It can also cause inflammation within the eye, making the eyes chronically dry and leading to a condition called Iritis or Uveitis. Inflammation within the eye is excruciating because it creates pressure, which the eye socket cannot expand to accommodate. It also presses the structures within the eye into each other and can cause permanent damage or, if untreated, loss of vision. The eye develops redness within the whites of the eye and can bleed over into the iris. Not only is this condition excruciating, but it is also temporarily (and occasionally permanently) disfiguring. Another comorbidity is vasculitis or inflammation of blood vessels. This is another condition that is visually unpleasant and painful. It’s also possible for a person to have more than one type of autoimmune disease. Some patients also develop rheumatoid or psoriatic arthritis. These diseases typically attack the synovial tissues surrounding joints, causing them to harden and creating early joint erosion and disfiguring certain joints (particularly the small joints in hands and feet). Psoriatic arthritis also attacks the patient’s skin, causing Psoriasis and damaging joints.

AS and some of the medications used to treat it, Prednisone specifically, can also cause osteoporosis, a disease that results in bones losing strength and stability. Unfortunately, this can result in individuals developing brittle bones much younger than typical individuals without AS. Any time a person has osteoporosis, they are more susceptible to bone fractures. AS patients need to discuss calcium supplements and advocate for regular bone density testing with their rheumatologist as they are prone to developing osteoporosis at younger ages. Kaiser Permanente, for example, will not reliably send a patient in their 20s-40’s for regular bone density screenings or x-rays to monitor disease progression or MRIs without the patient requesting and heavily advocating for tests. Indeed, AS is a condition that requires that each patient educate themselves about the disease, treatment options, what tests are needed regularly, and what the tests monitor. Biologics and MRIs are very expensive, and many health care systems and insurance plans are structured to keep costs at a minimum. There are often requirements that must be met for insurance to cover more expensive medications, treatments, and tests.

Patients may be required to try lower-level interventions to treat their illnesses. In these situations, patients must speak up if pain and function are not improving rather than accepting a lower quality of life. They should strive for the highest level of operation and the least amount of pain compared to their peers because that is also the level at which their disease is the most controlled and, therefore, does less permanent damage. Women with children tend to accept pain in the lumbar, sacroiliac, and hip areas. Often, they assume it is from childbirth and will live with symptoms that could be reduced if they would seek medical care and advocate for themselves. Many males AS patients, especially those with physically demanding professions, assume their pain is due to work. They might visit a chiropractor but aren’t as likely to spend the time on doctor appointments and testing. Too many people feel that communicating their pain and suffering to their doctor makes them weak and, thus, only seek treatment when symptoms are so severe that they can no longer work. Their AS is still treatable but may have already caused permanent joint damage. The long-term effects of chronic inflammation are still being studied but have been linked to cancer, stroke, and heart disease. For these reasons, early diagnosis, treatment, and constant monitoring are necessary to maintain optimal quality of life for as long as possible. When caught before having caused severe damage and treated with a high level of care, AS patients can often live relatively everyday lives. There are always cases that are difficult to treat, and these patients need to communicate with their rheumatologists and advocate for higher-level medications.

Besides medical care, self-education, and medications, it is vital that people with AS lead a balanced lifestyle. Sleep and rest are even more critical because the disease can often lead to fatigue. Most AS patients need 8-9 hours of sleep every night and at least one day per week of rest to function at their best. This can be very difficult to accept, especially for younger patients and those with children. Drinking enough fluids, eating a healthy diet, and identifying and avoiding allergens in one’s diet can help optimize patients’ energy. Additionally, there are some natural supplements shown to reduce inflammation. Turmeric capsules, manuka honey, and a balanced omega fatty acid supplement are now being recommended by some doctors.

Exercise has been shown to help people with AS feel better, but it is essential not to overdo it, to accept one’s limitations and work with them to prevent injury or flare-ups. Exercise routines should be started gently and according to the individual’s abilities. Physical therapy is never a wrong decision once a person has their diagnosis and treatment plan squared away (not before, or PT can cause injury and waste the patient’s valuable time to slow down disease progression). A physical therapist can often teach body-weight exercises and modify them to each patient’s abilities. Although motivating oneself when in pain might be challenging, finding a form of exercise that doesn’t aggravate symptoms and sticking to a regular exercise schedule help manage symptoms. Swimming is low impact and can be done with flotation devices to reduce strain on sore joints. Pilates is another excellent option. Yoga can be a bit dangerous for people with joint changes. It is crucial to find an instructor who has worked with patients with joint changes and osteoporosis and for each patient to know their limits and stop if something is painful.

Often the symptoms of AS can lead to feelings of isolation. Unsurprisingly, an illness that causes chronic pain can also cause depression. Pursuing professional assistance in managing depression is critical, as depression can significantly affect pain levels and reduce the quality of life. Additionally, several antidepressants have the beneficial side effect of modulating pain and can serve a double role in managing depression and despair. Some can even increase energy. Many health plans and pain management programs offer classes for dealing with chronic illness. There are many AS patient groups on social media as well. Although unable to give medical advice, these groups help share experiences, relieve anxiety, find coping techniques, feel understood, learn about how medications affect others, deal with doctors, and find community and support for others with the same illness. This last item is beneficial as friends and family may not understand precisely what the patient is experiencing.

Watch YouTube Video: Caroline’s Story – Ankylosing Spondylitis. Caroline is a mom with a busy schedule who suffers from autoimmune disease. She tells her story of how she lives with Ankylosing Spondylitis (AS).

I’m Ed Smith, a Northern California Personal Injury Attorney. If you or someone you care about has been injured in a motor vehicle collision and you have AS, please call our law office for free, friendly case advice at (916) 921-6400 or (800) 404-5400.

Image by Rolf Montag on Pixabay

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