Ankylosing Spondylitis Research

Ankylosing Spondylitis (AS) is a form of arthritis that primarily affects the spine, though other joints can be included during the progression of the disease. To clarify the medical name, Ankylosis means “fusion” and Spondylitis means “inflammation of the spine”.

AS will in some way, shape or form affect your body through inflammation of the ligaments and joints in your lower back – causing anywhere from mild to severe chronic pain. Some days you will feel fine and other days the inflammation and pain will flare up. As the disease progresses, symptoms may subside in their level of severity.

The trademark of the disease is its impact in the sacroiliac (SI) joints where the spine meets the pelvis – causing inflammation, pain and stiffness (Spondylitis Association of America). In some advanced stages, the healing and repairing on the spine due to inflammation can result in bone fusion. The formation of new bone between the vertebrae makes the spine rigid and more prone to fractures. Mobility also becomes an issue as your range of motion may become limited. A rare and eventual forward stooping of the spine, called kyphosis, causing you to walk in a bent over position. Fortunately this condition is becoming more uncommon with medical advances and information on correct body posture.

It’s comforting to know that you are not the only person in the world dealing with this disease and that there are a myriad of different medicinal and alternative treatments out there. People living with AS ski, go to work and lead normal lives. You basically have the same chance of becoming bed-ridden as you do getting eaten by a Great White Shark. EraseAS.com is here to offer support, information and hopefully a cure. This Web site is a guide to understanding the finer points of AS beyond just the basic facts.

AS is the main disease in a group of diseases known as Spondylitis; which comprise six out of all 100 rheumatic illnesses in the world.  AS is actually more prevalent than multiple sclerosis and cystic fibrosis combined (SAA) Medical experts believe the onset of AS is associated with the Human Leucocyte Antigen B27 gene (HLA-B27), though testing positive for the gene does not imply a positive diagnosis for AS. AS is considered a hereditary condition and “triggers” like a bacterial infection or other genes are also thought to initiate the disease.

The onset of AS occurs between the ages of 15 to 35 and approximately half a million people in the United States suffer from the disease. According to Dr. Muhammad Asim Khan, rheumatologist and AS patient, the diagnosis of AS can be delayed by five to six years. The severity level of the symptoms ranges from person to person, though males are more prone to the disease than women on a three-to-one ratio.

Being a systemic disease, the inflammation and pain caused by AS can affect joints beyond the spine like the hips, shoulders, ribs, heels, hands and feet (Dr. William Shiel, medical author of MedineNet.com and rheumatologist). The chest, jaw, eyes, kidneys, heart and lungs can also become inflamed and cause mild to severe pain. During a routine examination, your rheumatologist will look for some of these tender or painful areas. Sitting in a paper nightgown isn’t a fun experience but it’s a first step to early diagnosis.

Diagnosis
Normally you would see a rheumatologist to diagnose AS. A rheumatologist is a doctor specially trained in disorders that affect the joints, muscles, tendons, ligaments and bones of the human body. Since AS is an arthritic condition and requires frequent medical visits, it’s important to find a doctor you are comfortable with. Think of it as choosing a car. You don’t want a vehicle that may fail you. At the same time you don’t expect the car to run without maintenance. A good doctor-patient relationship is built on mutual understanding, commitment and team effort – especially when fighting AS.

During the physical exam, your rheumatologist will ask about your medical history, family history, perform x-rays and test for the gene HLA-B27. He or she will also search for sensitive areas – called “hot spots” – along your body for pain and tenderness, and look for any decreased range of motion in the joints.

Be prepared with your family’s medical history and any occurrences of iritis (inflammation of the eye), gastrointestinal infections and fatigue in your past. Also don’t expect the x-ray to detect any inflammation in the sacroiliac joints as it can take up to 10 years for changes in the SI joints to show up (SAA).

Chronic inflammatory back pain and stiffness is usually the first symptom of AS, though it is not enough to make a diagnosis. There is no specific diagnostic laboratory test or blood test for AS and misdiagnosis can occur during the early stages of disease progression (Khan). That’s why it’s important to get a regular physical exam at least once a year.

A positive result for HLA-B27 does not imply the diagnosis of AS. According to the SAA, about eight percent of the Caucasian population has the HLA-B27 gene, but only about two percent will eventually get AS. The connection between AS and HLA-B27 varies among ethnic groups: Seven percent of Northern Scandinavians with AS test positive for HLA-B27, 50 percent of African Americans living with AS have the HLA-B27 gene and 80 percent of AS patients from Mediterranean countries are positive for HLA-B27.

Some of the things your rheumatologist will look for (SAA):

• If you are the age of onset (15-35)
• If you have any tender or inflamed spots
• If the pain is chronic
• If the pain or stiffness came on gradually
• If back pain and stiffness worsens when immobile
• If back pain and stiffness eases during physical activity

Causes
The exact cause(s) of AS is unknown, although research suggests a genetic connection. According to Dr. William Shiel, about 90 percent of patients with AS are born with the HLA-B27 gene – making the risk of developing AS genetically inherited. People who test positive for the HLA-B27 gene have six times greater a chance of contracting AS if they have relatives with the disease. Hence the importance of knowing your family’s AS history.

Apart from hereditary factors, environmental issues like a bacterial infection and other genes play a role in triggering AS in susceptible people. Tissue inflammation, resulting from an overactive immune system due to a bacterial infection, is the primary feature in an inflammatory autoimmune disease like AS (Shiel). According to the SAA, the HLA-B27 gene accounts for approximately 40 percent of the overall risk of developing AS. Essentially, the trigger(s) for AS could be a combination of different factors.

Because the specific cause of AS is unclear and disease development is directly associated with hereditary factors, prevention is medically deemed impossible. Treatments are designed to ease pain and stiffness, deter deformities and possibly halt disease progression – not prevent it. On the other hand, there are remedies in out there claiming to know the “triggers” for AS and how to hinder them from initiating the disease. Please check our treatment section for more information.

At Risk
People with a family history of AS are more prone to contracting the disease since the marker gene HLA-B27 is considered to be passed down generation by generation. Testing positive for the HLA-B27 gene makes a person more susceptible to developing the condition, though a positive test for the HLA-B27 gene does not ensure you will get the disease. Since the symptoms for AS usually occur between the ages of 15 and 35, it is rare for people under or overage to develop the disease, though it is possible. People with a family history should get tested as soon as possible. Early diagnosis allows more time to fight or halt disease progression.

Certain ethnic groups and races have a higher frequency of the HLA-B27 gene. For instance, the prevalence of the HLA-B27 gene and the disease AS is much higher in Native American and Caucasian groups than African American, Asian and nonwhite races (Khan). Remember, there is a parallel between the HLA-B27 gene and AS but not a direct connection. A Native American and African American may both have the gene, but the Native American has a higher chance of developing AS than the African American.

Men are two to three times more likely to contract AS than women, and some studies show men are more likely to develop kyphosis if fusion occurs. Women however tend to experience more severe pain since prolonged fusion of the spine means continued inflammation (SAA).

• Men living with AS: Males have the potential of developing a depression disorder – which is not so out of the ordinary when you are dealing with chronic pain and loss of mobility on a daily basis. Men AS patients can also experience a lower sperm count, not as a result from AS, but from certain medications like Sulfasalazine.
  
  
• Women living with AS: Females are sometimes misdiagnosed with another disease since AS is less common in women – adding frustration to the scenario. Fortunately AS has no harmful effects on pregnancy, fetal safety and delivery. Medication used during pregnancy to ease symptoms should first be discussed with a doctor and can have some adverse effects. Women are also prone to developing depression like men.

On the other hand, with exercise, proper posture and medicinal or alternative treatments, the symptoms of AS can effectively be controlled. Just as symptoms vary from person to person, so does the course of the disease. The onset of AS may be extremely painful or barely noticeable. How the disease progresses depends on your involvement.

Symptoms
Although AS does not follow the same course in everyone, some symptoms are more prevalent than others. For example, according to the SAA, Iritis (inflammation of the eye) is extremely common while neurological problems are particularly rare. The initial symptoms of AS include stiffness and pain in the lower back and pelvic area – although inflammation in the shoulder joints can also occur early. Often times, pain and stiffness associated with inflammation occur in the morning or during a long phase of inactivity. The following list includes the range of different symptoms commonly associated with AS. Symptoms are arranged in the general order of occurrence during AS progression.

• Sacroiliitis: Inflammation of the sacroiliac joints – where the spine meets the pelvis (SI).
  
  
• Enthesitis: Inflammation of the enthesis (where the joint capsules, ligaments and tendons attach to the bone). This includes swelling and tenderness along joints like the back, pelvis, chest and heel.
• Inflammation of the heel can have a serious impact on person’s mobility. Inflammatory spots include the Achilles tendon and plantar fascia.

• Spinal Conditions: The repair process following inflammation leads to scarring of the tissue and extra bone formation along the spine. During severe stages of AS, incessant healing and inflammation can cause fusion of the spine and sometimes other joints as the disease progresses. This leads to an increased possibility of spinal fractures since the spine has little flexibility, and bone formed during the fusion is weak. It also causes great discomfort to the person since he or she may be forced into a stooped position – which is thankfully far less common now with treatment advances and information on posture.

• Hip and Shoulder Conditions: One-third of the AS population experiences hip and shoulder problems. Hip strain comes on gradually and is often felt in the groin area, but can also be mistakenly felt in the knees or thighs – otherwise known as “referred pain”. This is sometimes misleading during an examination of inflamed areas. Hip discomfort is more common in younger people while shoulder involvement is mild.

• Neck Pain: The cervical section of the spine is the most mobile area on the back and stiffness in this area can greatly affect a person’s mobility such as turning the head and looking up and down.

• Knee Pain: Although knee pain and stiffness is usually associated with pain in other areas of the body like the hips, about 20 percent of people experience inflammation in the knee capsule as a separate symptom.

• Jaw Pain: Approximately ten percent of people have inflammation of the jaw – making it hard to fully open their mouth when chewing.

• Chest Pain: Chest pain can imitate cardiac angina – pain caused by deep breathing when the outer lining of the lungs is inflamed. Over time the joints between the ribs and spine, and where the ribs meet the breastbone, develop decreased chest expansion due to scarring of the tissue from inflammation.

• Iritis (Inflammation of the eye): Thirty to forty percent of people experience iritis. Symptoms can occur in each eye at different times and include redness, pain, sensitivity to light and blurred vision. See a doctor immediately if you think you have irits.

• Heart Conditions: Sometimes a rare chronic inflammation at the base of the heart around the aortic valve will occur. Long-term inflammation at these sites can lead to heart blockage and valve leakage. This problem is seen in fewer than two percent of people with AS and is detectable.

• Lung Conditions: Due to chest pain and poor chest wall movement comes the possibility of fibrosis scarring at the top of the lungs. This condition can make it longer for colds and respiratory infections to heal. Smoking is out of the question.

• Kidney Conditions: Kidney problems are caused by long-term treatment with nonsteroidal anti-inflammatories. This condition is extremely rare in the U.S.

• Neurological Complications: Very rarely, advanced AS patients experience problems from the scarring of nerves at the base of the spine. This can cause urinary retention, loss of bowel control, sexual dysfunction and pain or weakness in the legs. It is necessary to see a neurologist at this point.

Potential Cures
Currently there is no cure for AS – but that just means one hasn’t been discovered yet. There are holistic treatments, medications and daily exercises to reduce and manage the pain. Biologic medicines called Tumor-Necrosis-Factor blockers (TNF-blockers) can potentially slow down or stop the progression of AS. Some remedies may be disappointing and others surprising. Simple strategies like daily exercise and attention to posture make a world of difference. Continue to educate yourself about different treatments, side effects and activity in medical research. For more information, go to our Treatments section.

Prognosis
The outlook for AS sufferers is on the positive side. Approximately nine out of 10 people with AS lead a normal, active life, are independent and experience little to no disabilities due to the pain, stiffness and inflammation associated with the disease (Patient UK).

Flares (acute symptomatic episodes followed by remission) occur chronically since AS is a life-long disease. Once the early stages of inflammation are behind you, the severity of these flare-ups may subside to a mild or moderate level. Of course the intensity of the disease’s activity varies from person to person without regard to age, race or gender.

On the other end of the scale, AS patients are more prone to back injuries since the spine is inherently more fragile due to the stiffness and potential bone fusion. Arthritic conditions rarely stray from the lower back and hips although inflammation in the eyes and other joints do occur.

Constant, in-depth research is being conducted by medical professionals, patients and the concerned public to find the “triggers” that bring on AS. So far no specific cause has been discovered by medical professionals or scientists, although an extensive range of alternative, unconventional and medicinal treatments are cropping up. With further research and constant exchange of information among all parties, a cure is definitely possible.

References:

• Spondylitis Association of America
• Muhammad Asim Khan, MD, FRCP, FACP, Professor of Medicine, Division of Rheumatology
• William C. Sheil Jr., MD, FACP, FACR, chief medical or of MedicineNet.com
• Medline Plus Drug Information
• Drugs.com Prescription Drug Information
• National Ankylosing Spondylitis Society
• The American Academy of Orthopaedic Surgeons
• Patient UK
• National Center for Complimentary and Alternative Medicine