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Frequently Asked Questions

What is spondylitis?

Spondylitis is the name given to a group of chronic or long lasting diseases also called Spondyloarthritis or Spondyloarthropathy (spon-d-low-are-throp-ah-thee). These diseases are forms of inflammatory arthritis that primarily affect the spine, although other joints and organs can become involved. The group of diseases in the spondylitis family includes: Ankylosing Spondylitis (AS), Undifferentiated Spondyloarthropathy (USpA), Juvenile Spondyloarthropathy (JSpA), Psoriatic Arthritis (PsA), Reactive Arthritis (ReA), and Enteropathic Arthritis.

What kind of doctor treats ankylosing spondylitis?

The type of physician who primarily diagnoses and treats ankylosing spondylitis and related diseases is called a rheumatologist. Rheumatologists treat arthritis, certain autoimmune diseases, musculoskeletal pain disorders and osteoporosis. There are more than 100 types of these diseases, including ankylosing spondylitis (AS), rheumatoid arthritis, and lupus. Other professionals can also help treat AS and related diseases such as physical therapists, occupational therapists, etc.

What is the cause of ankylosing spondylitis?

Although the exact cause of AS is unknown, we do know that genetics play a key role. Most individuals who have AS also have a gene that produces a "genetic marker" - in this case, a protein - called HLA-B27. This marker is found in over 95% of people of European ancestry with AS. However, scientists know that other genes, along with a triggering environmental factor, such as a bacterial infection, are needed to trigger AS in susceptible people.

What is the HLA-B27 gene?

HLA-B27 is a perfectly normal gene found in 8% of the general population. Generally speaking, no more than 2% of people born with this gene will eventually get spondylitis. The gene itself does not cause spondylitis, but people with HLA-B27 are more susceptible to getting spondylitis.

If a parent, brother or sister has spondylitis, and I test positive for HLA-B27, what are my chances of getting the disease?

If a family member had spondylitis and you test positive for the HLA-B27 gene, your chance of getting the disease increases to 20%, if you are under age 40. If you are over 40, your chance of developing spondylitis is very low. If you have AS, the likelihood of passing it on to your children is relatively low. There is approximately a 50% chance that the child of one HLA-B27+ parent will inherit the gene, but only a small percentage of those will develop AS.

How is ankylosing spondylitis diagnosed?

A thorough physical exam including x-rays, individual medical history, and a family history of AS, as well as blood work including a possible test for HLA-B27 are factors in making a diagnosis.

Is there a cure?

Currently, there is no known cure for ankylosing spondylitis, but there are treatments and medications available to reduce symptoms and manage the pain. Recent studies show that the new biologic medications can potentially slow or halt the disease progression in some people.

How is ankylosing spondylitis treated?

Exercise is essential. A common treatment regimen involves medication, exercise and physical therapy, and good posture practices.

What kind of exercise is best?

Before beginning any new exercise program, consult your physician or physical therapist. They can help provide modifications to suit your particular needs. Ask which exercises you should do and then check to see that you are doing them correctly. Water therapy, tai chi, and even walking are common forms of low impact exercises that many find helpful.

Why is good posture important?

Bone fusion does not occur in everyone with spondylitis, yet fusing in a non-upright position is a valid patient concern. It is encouraging to know that we can influence the pattern of fusion through good postural habits.

Will I become disabled?

The severity of AS varies greatly from person to person, and not everyone will experience the most serious complications or have spinal fusion. Some will experience only intermittent back pain and discomfort, but others will experience severe pain and stiffness over multiple areas of the body for long periods of time.

Once the fusing begins, is there a way to stop it or slow it?

The TNF-α blockers being used in AS seem to stop or slow radiographic progression in many AS patients. The problem is that they are expensive and we do not yet have long-term data on the safety profile. There are now international guidelines that we are using not only to help determine who needs the drug, but also who is most likely to benefit from the drug. We are trying to implement those with patients. That is the only treatment that we are aware of right now that appears to stop the fusion, and whether or not they continue to work over time, remains to be seen.

Why do we require NSAIDs and sulfasalazine before moving onto Enbrel or one of the other TNF-blockers?

We know that exercise, physical therapy and NSAIDs work fine for some people. We don't know exactly what the percentage is, but it might be as high as 50%. In addition, the TNF-blockers are very expensive, and they have potential side effects. So the real issue is, if you don't need them, why take them?

What are the most serious potential side effects of the TNF-α blockers?

The main side effect we see on a regular basis is increased infections. We need to test for TB before we use TNF-blockers, and we need to treat TB if a patient has it. There is a risk of increased sinus infections, bronchitis and pneumonia. Other issues that are still being investigated are the risk of lymphoma, congestive heart failure and multiple sclerosis. We are still trying to figure out how important those things are after TNF-blockers.

I am considering being treated with one of the TNF-α inhibitors, and I was wondering what might happen to someone who has undetected pre-cancerous cells of the prostate, cervix, or anywhere else in the body where it may take a long time for cancer to show up. Has anyone talked about this, or are patients automatically pre-tested for these conditions before starting the TNF medications?

Serious concerns have been raised along these lines. Little has been raised about prostate cancer, but that's because most of the target population to date has been younger patients with rheumatoid arthritis or Crohn's disease. There is a tendency to shy away from giving the TNF-α inhibitors to patients who are breast cancer survivors. However, there is no data (yet) that suggests an increased risk of cancer in this younger patient population that has been treated for only a handful of years. I am unaware of any systemic monitoring in this regard. I believe that we are simply relying on the typical ‘observational’ approach.

What is the role of health psychology, social intervention and behavioral medicine in managing a chronic progressive disease like spondylitis?

A person with spondylitis needs and deserves health psychology intervention to learn how to actively cope and maximize quality of life. During the past few years, we have come to experience vast improvement in biomedical treatments in rheumatic disease, which now provide hope for the future. That said, the underlying illness is still there. There is only so much that biomedical treatments can do, and they cannot help with underlying issues. This is a tremendous need.

What can be done to help?

There is a range of modalities to help rheumatic patients cope with disease, many of which can be incorporated into a person's lifestyle. For example, research has been able to show that mindful meditation and Tai Chi can have a very powerful positive effect on pain and inflammation in rheumatic disease.

In an ideal world, how would these services be delivered to the patient?

Ideal care would be multi-disciplinary within one clinic. All care would be provided by a team of experts - including health psychologists. In this manner, unique solutions could be adapted to the unique problems that affect the spondylitis population, biomedical, social and other aspects of care.

What are some of the current barriers to ideal care?

Access to care is fraught with problems. Even under the best of circumstances - that is, when a person has insurance to cover health psychology, there are access issues. Many times, care will need to be segmented to separate locations, which hinders the collaborative effort between the rheumatologist and the psychologist caring for the patient. Moreover, it is often very difficult to get authorization for reimbursement for services, which means that often times, we just don't get paid. Even in the minds of the well informed, mental health is often confused with mental illness, which creates a significant barrier to access to behavioral medicine services. Another issue, is that doctors are often limited by their own time, and don't have adequate contact with the patient to recognize the need for these interventions or may even underestimate their value.

What are the family issues, and can it be helpful to intervene within the family unit?

Yes, indeed. There is marital risk in rheumatic disease. For example, the divorce rate in rheumatoid arthritis is higher than the national average. Families can help, but this can lead to overload and overburden. Working with the family unit can help to provide healthy coping mechanisms to engage hope and optimism for the future.

Which are the major issues where health psychology and behavioral medicine can provide the most benefit?

There are pain issues, mood disturbances, sleep disturbances, self-esteem issues. When a person is actively engaged in dealing with these issues, and has a healthy perspective, self-esteem is returned and quality of life includes hope and optimism.

How important are genetics in towards ankylosing spondylitis?

Ankylosing spondylitis is largely genetically determined. In fact, we believe that up to 97% of all the risk for ankylosing spondylitis is contributed by hereditary factors. With identical twins, if one gets AS, the other has a 63% chance of getting AS. AS is called a complex genetic disease because there is more than one gene involved.

What would be some long-term negative side effects of nonsteroidal anti-inflammatory drug (NSAID) use?

Years ago, when Anacin and other painkillers still contained phenacetin, patients who took it in large amounts over many years developed severe kidney problems. This is rarely seen today. However, the questions that still need to be asked are whether the side effects of the treatments we prescribe are worse than the effects of the disease itself. In the case of long-term use of NSAIDs, some people still have kidney problems, but it is a small percentage. So, in considering the risks of not treating vs. using NSAIDs, the benefits are still favorably weighted toward taking NSAIDs.

Are there certain types of foods that increase severity of symptoms in AS?

Rheumatologists believe this not to be true. There was a lot of work done in the '80s looking at the potential anti-inflammatory properties of polyunsaturated fatty acids (such as omega 3 fatty acids) in the diet. However, nothing has been found that is really compelling here.

My doctor says that my C-reactive protein (CRP) blood levels are within the normal range. Then why do I still have all of this pain and inflammation going on?

The C-reactive protein test is one of the best blood tests (markers), that we have in following patients with AS, and it is not very good, especially when the AS is limited to the spine, and isn't in the other joints outside the spine. Too much emphasis should not be put to the eRP test result by itself.

My doctor says that according to the x-rays over the past couple years, I am in remission, but it doesn't feel that way.

If you are still hurting, it isn't in remission. And we have to remember that it takes at least two years before even a minimal change can be detected on x-rays - two years before there is even a tiny little progression of a bone spur (called a syndesmophyte). MRI is showing to be a better tool in this process.

I feel pretty well, and am able to maintain a daily exercise program. Should I be seeing a rheumatologist?

There are not good studies in people like this. Most of the studies are done on people on the other side of the coin people who are feeling terrible. People like you, often don't even go to the doctor and thus are not studied. However, it might be appropriate for you to be monitored every couple of years. This disease really differs greatly among individuals. For instance, we see patients who have had AS for years with very mild x-ray changes, and we see people who are just twenty years old for whom both hips are already severely damaged. It moves differently from patient to patient and it is that patient with fast moving AS who needs to be identified and treated very aggressively.

I notice that I have flare-ups when I have stress - physical or emotional. Can this be explained scientifically? It is truly amazing that this can happen within a matter of hours.

Stress can certainly account for that, but it is difficult to live a life without stress. Since stress is with all of us in life, it can be important to figure out how to deal with it and to treat the flare-ups.

How is the decision made on who needs the TNF-α blockers?

Right now, we are restricting them to patients who adhere to the New York modified criteria for AS (diagnostic confirmation criteria for AS). A one-page test called the BASDAI (Bath Ankylosing Spondylitis Disease Activity Index), which can be found on the SAA web site, scores an average on six scales between 0 and 10. A person needs to score a 4 on this on average, have active disease for at least four weeks, and have failed at least two NSAIDs. Of course, the usual contra-indications must be taken into account (chronic infections such as tuberculosis, cancer, or other rheumatic disease such as lupus). With the use of TNF-α blockers, the BASDAI in most patients will improve; however, if the treatment hasn't worked within six to twelve weeks, then it most likely will not work.
Bottom line: TNF-α blockers are very expensive, they work, but not everyone with AS needs them.

How is a decision made for a patient with undifferentiated spondyloarthritis?

Usually, we get an MRI of the foot, for example, which is often a big problem in USpA. Patients with USpA often get terrible heel pain or a swollen Achilles' tendon. The MRI will show inflammation. If this has been going on for a while and nothing seems to work, we might try a TNF-α blocker, and often, yes, they work very nicely. However, this is off label use - meaning that the drug is approved for a different disease than the one being considered for treatment. Sometimes insurance companies will refuse to pay for ‘off label’ treatments. Right now, pretty much all of the TNF-α blockers are getting paid for.

What about the effects of changes in temperature and humidity on spondylitis?

A lowering in barometric pressure, such as when a thunderstorm or a cold front is coming, causes any kind of arthritis to feel much worse. That is a time-honored principle that we still don't understand. With humidity, it is not so clear. It used to be believed that a drier environment was helpful, and people with arthritis used to move to places like Arizona, but this doesn't seem to have really held up.

What about spinal osteotomy to straighten the spine?

In 1998, there was a meta-analysis 1945-1998 (a large scale analysis of studies on a specific topic) that looked at this procedure, which actually can be done several different ways. They found that, as a rule, they are able to have an average correction of the curvature of 37 to 40 degrees. The mortality around the time of the surgery was about 4% - usually due to pulmonary, cardiac and intestinal problems. One severe complication is spinal cord damage in a small percentage of patients. Overall, however, that is the amount of correction that they seem to be experiencing. Of the three different procedures, the one called ‘closing-wedge osteotomy’ seems the one that has the lowest incidence of the spine going back to the way it was.