Question: Is spondylitis rare disease or is it more common than is generally accepted?

Answer: To dispel the some of the myths and misconceptions about spondylitis, it is important to know that it is not a disease of "older people" -- everyone can get it, and that also it is a very common disease, contracted by 1/200 adults in the United States, alone. However, it is problematic in that so many remain undiagnosed.

Question: There seem to be many myths surrounding Ankylosing spondylitis (AS) and its onset and diagnosis. Could you please talk about them?

Paul M. Peloso, MD, responds: Yes. Interestingly, we have this view that AS begins between 18 and 25, but this is not true. It occurs in kids, and also people in their 60s, as the Carbone study from the Mayo Clinic showed. We used to think it was rare in women, but this is also not true. Women have a longer delay in diagnosis compared to men for this reason. Neck involvment is very common after 15 or 20 years, but if the disease starts in the neck and not in the low back, that also delays the diagnosis, because we are not used to thinking it starts there. And many textbooks say it is not likely to cause disability, which is most definitely not true.

Question: If my children test negative for HLA-B27, does that mean that my grandchildren will not develop AS? How prevalent is the HLA-B27 gene?

Answer: HLA-B27 is associated with AS, but the 90% association that is always cited is true of Northern European extraction, including the Swedes and the northern part of England. They are 90%, but in the South of France, Spain, southern Italy, and the Mediterranean region, the association is much weaker. So, as part of the answer, the association depends upon ethnicity, not just the color of skin. Among Jews, and others, the association is even weaker. Now, if we take Americans of African descent as an example, only 50% of those with AS have the gene. Therefore, we cannot really use the gene as a test. The point that I am making is that this is a healthy, normal gene and that if a patient has AS, he or she doesn't have to be tested if the diagnosis is obvious because, in fact, testing for B27 has actually led to further delays in diagnosis among B27 negative patients. So, if we have the B27 gene, we do not need to test our children because half of them, roughly, will possess the gene, and even though they have the gene, most of them will never get AS. It is much better as an educated patient to know when to seek help if your child starts getting the kinds of symptoms that would suggest AS. Then, the gene typing can be helpful. If you have no psoriasis, no Crohn's disease running in the family, no ulcerative colitis running in the family, the chances are that your children and grandchildren will not be afflicted. In addition, it is important to remember that once the test for the gene has been done, there is no need to retest since it cannot be acquired or lost, but is something that a person has present at birth or not.

Question: How useful is magnetic resonance imaging (MRI) in diagnosing and tracking the disease process in AS?

John D. Reveille, MD, responds: MRI is one of the diagnostic tools that is showing promise to help us to better diagnose and follow our patients with AS. However, its use is still under development, and standardized measures are being evaluated. Currently, the fact is that up to 10 years pass from the onset of inflammatory back pain until anything shows up on a regular x-ray. MRI is one of the instruments being used to try to develop new criteria to diagnose AS earlier and better. One of the advantages of MRI is that it can detect edema (water) in the bone early on in the disease process, which is thought to represent inflammation. In addition, potentially, it can be used to measure a person's response to treatment.

Question: An MRI scan showed four ruptured discs in my vertebrae-am wondering whether I should have surgery to remove them, and what impact would that potentially have on the AS.

John D. Reveille, MD, responds: Data seems to show that when people are followed up two and five years after having a disc taken out, they are not any better than those who didn't have the procedure. In fact, only a very small number of people with a ruptured disc ever require surgery. For about 90% of people, the natural history is for the ruptured disc to resolve by itself (go away). One would think that since people with AS have the disc "encased" by new bone, there would be less opportunity to rupture the a disc. However, the reality is that most people don't have their discs totally encased or fused. The only potential indication for surgery is if the pain is so bad that you can't stand it and it is not getting any better, or if there is nerve damage, such as severe numbness or inability to raise the foot. Most people don't have ruptured discs that affect them that severely. It also is important to remember that even in "healthy" people under age 65, one out of five will have a ruptured disc on an MRI scan, with no symptoms at all. Over the age of 65, one out of three will have a ruptured disc without any symptoms and one out of five will have asymptomatic spinal stenosis. Thus, the MRI findings must be interpreted by the doctor, making sure what is seen matches what is found on talking to and examining the patient.

Question: What are the advantages to using MRI screening for AS compared to regular (plain) xrays?

Paul M. Peloso, MD, responds: The plain xray may look normal for two to five years beyond the time when an MRI or CT scan already shows there are changes from the AS.

Question: I recently was diagnosed with AS, and I would like to know what role my rheumatologist should have in managing it.

Muhammad Asim Khan, MD, Professor of Medicine, Case Western University School of Medicine, Cleveland, Ohio, responds: The rheumatologist's primary role is to decide on the diagnosis and recommend the right kind of management for your disease. Many patients with AS may need to be seen by a rheumatologist at periodic follow-up appointments over an extended period of time, rather than being cared for by their primary care doctor.

Regular exercise is of fundamental importance in preventing or minimizing ankylosis (stiffness) and deformity. The people with AS most likely to follow a regular exercise program are those who visit a rheumatologist, believe that the exercise is a benefit, and are well motivated and educated about their disease. It is the doctor's job to relieve pain and stiffness, and the patient's job to perform regular exercises and to maintain a reasonably good posture.

Many people with AS will do very well if they follow the doctor's advice on such things as medication dosages, how often to exercise, etc., but research shows that many patients do not follow what the doctor suggests.

Question: I like my current rheumatologist because she knows more about my psoriatic spondylitis than any other doctor I have seen. My only complaint is that she constantly checks her watch while I am trying to ask questions and I feel rushed!

Muhammad Asim Khan, MD, responds: The most important but often neglected contribution to a doctor treating any patient is effective, two-way communication. Unfortunately, there are some physicians for whom time is such a previous commodity that they begin showing impatience. An ideal examining room would not have a clock on the wall, the physician would not wear a wristwatch.

Every physician should ask the golden question: "Is there anything else that you would like me to know?" if he/she does not ask you this question, explain that you know that doctor has patients waiting but that you need to ask a few important questions before leaving.

The comprehensive management of any illness includes not only medical, but also emotional and social support for the patient and the patient's family. If the doctor does not have time to educate the patient, he/she should be able to let you speak to a physician assistant, a nurse, or a social worker, and provide information about SAA.

If you feel your needs still are not being met, or if you have any doubts about your treatment, it is quite appropriate to ask for a second opinion from another consultant.

Question: How often does AS show up for the first time in people over 50?

John Reveille, MD, Researcher and Professor of Medicine, Division of Rheumatology and Clinical Immunogenetics, The University of Texas Medical School at Houston, responds: That is rare. I recall three different patients I diagnosed over 50, but they had had symptoms for years. I have certainly seen psoriatic arthritis start over 50 years of age.

Question: Can AS be triggered by trauma?

Robin K. Dore, MD, rheumatologist in Orange County, CA and Associate Clinical Professor of Medicine at UCLA, responds: It is likely that it can be triggered by trauma, e.g. physical or emotional illness. However, it's difficult to prove because we don't test people for HLA-B27 prior to these occurrences.

Question: I have very little pain and stiffness but a high sedimentation rate. Is it dangerous to have a sedimentation rate (SED) of 70 not brought down?

John Reveille, MD, responds: Don't get too upset about a SED rate of 70. We should focus on the patient, not the SED rate. In some AS patients it stays low; in others it never comes down even though the person feels fine.

Question: If you do not have the radiographic proof or are not showing any fusion and even an MRI (magnetic resonance imaging) is not showing that, is there something such as a pre-AS condition?

Answer: A pre-AS condition would require documentation of those changes on MRI. For treatment with TNF-blockers, the recommendation is that you have to have definite disease; and that recommendation requires that you have to have x-ray evidence of sacroiliac joint inflammation. For the time being, given that these drugs are costly, and that there are a lot of side effects, you don't want to include people with diseases that are not actually ankylosing spondylitis.

There is not yet a set of standards for diagnosis using MRI, but papers are being published where we could probably agree that some patients can be diagnosed as having very early stages of the disease. However, the "gold standard" for the diagnosis of ankylosing spondylitis for the purpose of TNF-blockers treatment is the presence of x?ray evidence of sacroiliac joint inflammation.

Question: How can I tell if I am getting the best care from my doctor?

Answer: There are some things that a doctor can do to improve the patient experience. From my perspective, I believe that it is important for the doctor to take time with the patient. This means, no clock watching while the patient is telling his/her "story" - and certainly, no interrupting during the history taking. If you let the patient speak, you will be able to make a correct diagnosis of ankylosing spondylitis. One of the problems with how we practice medicine today is that we don't allow adequate time to hear the patient out. It is nice to hear spontaneously from the patient rather than hurrying them and nudging their answer. Also, every physician should ask one specific question of every patient at the end of "history taking" and that is, "Is there anything else you want me to know"? You would be surprised how often important aspects come up, and then you ask that question without being in a hurry. I am a patient first and a physician second.

Question: Could you please tell us about heart valve inflammation and whether the rheumatologist is checking for problems in this area?

Answer: The question as it relates to AS is very specific since in AS it is the aortic valve that we are talking about. That is the outflow valve where the heart is pumping the blood into the main blood vessels and into the rest of the body. Heart problems in AS can be detected with a stethoscope, and most of us will listen carefully for aortic valve problems in patients with AS since these are seen more in the AS population than in unaffected people. I don't think that it is necessary for all AS patients to have screening tests, but, that said, your rheumatologist should listen to your heart for this particular valve problem and pay attention to any symptoms, including shortness of breath. Granted, there are many other causes of shortness of breath, but shortness of breath or fluid retention might raise a question about this valve.

The valve involvement is related to the duration of the disease. In the early stages, it is very uncommon for the heart valve to be affected, though it can occur. Some patients may have a "murmur" of the heart. Though not all. With advanced disease, a person may be short of breath. The other problem is associated with "heart block." In those cases, one of the symptoms will be a low pulse rate. Some of those people will need a pacemaker or valve replacement. It is important not to be too worried about this problem because it is relatively rare, but it is important for your rheumatologist to listen to the heart to make sure that there is not a problem. That said, even when there is a problem, in most cases it is very mild and does not have significant consequences.

Question: Does the forward stooping position in the upper part (neck area) of the spine mean that fusion of the spine has already occurred?

Answer: Forward stooping of the spine is a sign that the neck is showing the result of the inflammation That said, it was interesting for the researchers to observe during the clinical trials of the TNF-blockers that some of the patients, many of whom had 10-15 years of documented disease, were able see improvements in neck flexibility and chest expansion as a result of taking these drugs, in addition to an improved ability to bend forward, backwards and sideways. It seems that part of the limitation is a direct result of the muscle pain associated with AS, which causes muscle spasms, and because of these, there is an inability to properly use these muscles, which in turn causes fibrous adhesions and so on, even before bony fusion takes place. That is why many patients will show improvement on the TNF-blockers. However, if there is a totally fused spine with no joints left, then we do not expect to see these types of results.