This Is What Happens When You Don’t Treat Your Chronic Ankylosing Spondylitis

Sometimes, you may think treating ankylosing spondylitis (AS) seems more trouble than it’s worth. And we understand. But at the same time, forgoing treatment can mean the difference between living a healthy, productive life and feeling left in the dark. Here are seven things that could happen if you bypass treatment.

1. You might end up with a deformed spine

AS mainly affects the spine. With repeated attacks of inflammation, your spine starts to lose its flexibility. As the disease progresses, moving your spine gets increasingly difficult. The less you move your spine, the stiffer it can get.

In the most severe cases, chronic inflammation causes the formation of extra bone between your vertebrae. In time, the vertebrae can become fused together. Once that happens, your ability to move is severely restricted.

Think about all the everyday tasks that require bending, stretching, or twisting. As for posture, curvature of your spine can leave you permanently stooped over. Fully straightening your spine is no longer possible.

AS medications are designed to control inflammation. Physical therapy can help keep your spine flexible. Following a complete treatment plan can help keep your spine flexible so you can avoid or delay this complication of AS.

Beyond this point, there are few options. A type of surgery called osteotomy might be able to straighten and support your spine. It’s a procedure in which a surgeon has to cut through your spine. For that reason, it’s considered high risk and is rarely used.

2. Multiple joints and ligaments can become damaged

AS is chronic and progressive. Over time, it can fuse your spine and sacroiliac (SI) joints, which are in your hips.

For 10 percent of people with AS, inflammation of their jaw becomes a problem. It’s potentially debilitating because it makes it hard to open your mouth enough to eat. This could lead to malnutrition and weight loss.

About one-third of people with AS develop problems with their hips and shoulders. Some may have damage to their knees.

Inflammation can also occur where ligaments attach to bone. This can affect your back, chest, SI joints, and pelvic bones. It can also create problems for your heels (Achilles tendonitis).

These issues can cause chronic pain, swelling, and tenderness, and keep you from getting a good night’s sleep. They can interfere with everything from bending to the inability to turn your head while driving. Mobility becomes a growing problem.

Untreated spine problems can have a serious impact on your quality of life.

Treatment for AS can help prevent permanent joint damage and fusion. Once you have severe damage to your hips or knees, your options are limited. You may need surgery to replace your damaged hip or knee with a prosthetic one.

3. You can develop osteoporosis

Another potential complication of AS is osteoporosis. This is a condition in which your bones become weak and brittle. It puts all your bones at risk of fracture, even without a fall or hard bump. This is particularly worrisome when it involves your spine.

With osteoporosis, you may have to curb some of your favorite activities. Regular visits with your rheumatologist will help identify osteoporosis as a problem early on. There are a number of effective treatments to help strengthen your bones and lower your risk of fracture.

4. You might have problems with your eyes

Inflammation can also cause problems with your eyes. Anterior uveitis (or iritis) is a condition in which the front of your eye gets red and swollen. It’s more than a cosmetic problem. It can also cause blurry or cloudy vision, eye pain, and light sensitivity (photophobia).

Unchecked, anterior uveitis can lead to partial or complete loss of vision.

Sticking to your treatment regimen and having regular visits with your doctor will help catch anterior uveitis before your eye suffers permanent damage. Prompt treatment from an eye specialist, or ophthalmologist, can help protect your vision.

5. You’re at higher risk of cardiovascular disease

Because AS is a chronic inflammatory autoimmune disease, it increases your risk of cardiovascular disease. Cardiovascular disease includes:

  • high blood pressure
  • irregular heartbeat (atrial fibrillation)
  • plaque in your arteries (atherosclerosis)
  • heart attack
  • heart failure

You can lower your risk of cardiovascular disease by adhering to AS therapy. This should include a balanced diet, regular exercise, and not smoking.

Because you’re at higher risk, it’s a good idea to see your doctor regularly. The sooner you catch the warning signs of cardiovascular disease, the sooner you can start potentially lifesaving treatment.

6. Chronic inflammation can result in diminished lung capacity

Chronic inflammation can prompt new bone growth and scar tissue where your ribs and breastbone meet. Just as it does to your spine, it can cause bones in your chest to fuse.

That makes it very hard for your chest to fully expand when you breathe. Chest compression can cause pain that worsens when you take a deep breath. Not being able to breathe easily strains even the simplest activity.

You can lower your chances of this complication by taking medications to control inflammation. A physical therapist can also help you perform deep breathing exercises to expand your ribcage.

7. There’s a potential for permanent disability

Any of the complications listed previously can leave you with permanent disabilities. Having just one can lead to:

  • inability to participate in your favorite physical activities
  • mobility problems
  • decreased ability to work
  • loss of independence
  • lower quality of life

The goal of AS treatment is to slow disease progression and prevent the types of complications that can lead to permanent disability. A rheumatologist experienced in treating AS can help devise a treatment plan based on your particular needs and preferences.



Rocker Dan Reynolds ‘grateful’ for struggles of arthritis condition

The singer wants fellow pain sufferers to realise things will get better.

Imagine Dragons frontman Dan Reynolds has drawn strength from his debilitating battle with chronic arthritis pain and used it as inspiration for the band’s new material.

The Radioactive singer spoke candidly to People magazine in November (16) about his struggles with ankylosing spondylitis (AS), a type of arthritis which causes long-term inflammation of joints in the spine.

Dan admitted the illness had plagued him during the group’s rise to fame, and really left him in a “bad place”, especially as the rockers worked on their 2015 album Smoke + Mirrors.

“Right at the beginning of Smoke + Mirrors was really when A.S. was rearing it’s head in a big way,” he recalls in a new interview with People. “It was the beginning of the disease in a lot of ways for me and learning to manage it. So physically I was in a quite a lot of pain, and mentally I was in a very bad place as well.”

Dan has since gotten to grips with the condition, which now allows him to better manage his symptoms, and as a result, he has been enjoying “a very healthy year” after much “physical and mental work”.

Fighting through the health struggle has made him a more positive person, and now he’s able to recognise it has only made him stronger.

“I’m grateful for it,” he says. “Looking back in this last year from a place of health, you’re able to have greater perspective and I’ve had more perspective to see that a lot of the great things in my life are due to struggle.

“A lot of my greatest strengths are due to my greatest weaknesses or flaws or physical ailments. It brought me discipline, gratitude and compassion.”

Dan channelled his emotions about his illness into the band’s new single Believer, making it a really personal track to perform.

“The song is about how pain made me a believer,” he shares. “It’s made me a believer in myself, it’s made me a believer in my art and work. I wouldn’t have my art if it wasn’t for pain. It takes somewhat of a healthy place to appreciate it because when you’re in the midst of it you don’t appreciate it. You’re just upset.”

Despite Dan’s health turnaround, he insists there are still days when he struggles with severe pain, but he is urging others suffering from similar ailments to keep pushing through.

“With depression or A.S., it’s not just a pit for the rest of your life or this downward spiral. It’s the beginning of something that is going to cause you to have to grow to make changes,” he concludes. “While it can seem bleak right when you’re diagnosed, there are management plans so that’s why it’s so important for it not to remain a hidden disease and that awareness is raised.”



Spine Concepts, Low Back Pain

Acute low back pain or low back pain with sciatica radiating to the lower leg and to the foot (Figure 1). They are initially treated conservatively for at least six weeks by physical therapy, anti-inflammatory medication and limited activity (as guided by the pain).


Doctors should treat the condition conservatively. Even if there is a large disc herniation on the MRI, unless the disc is central or causing a neurological deficit, they need wait at least six weeks before beginning a more aggressive treatment. 90% of patients will have symptoms that resolve in one month. Smoking, depression and vibrations will increase the incidence of low back pain (Figure 2).


Intradiscal pressure (IDP) will change depending on the position (Figure 3). The lowest pressure is measured while the patient is lying supine. The highest IDP is measured while the patient is sitting, leaning forward and holding weight.


If the patient is experiencing low back pain and there is a history of cancer, the doctor will need to get an x-ray and MRI, especially if the pain occurs during rest and at night (Figure 4)! In case of a renal tumor, the physician will probably need to do arteriography and embolization of the spinal lesion.


The spine is a common location for metastatic tumors. Metastases occur in the vertebral body and go to the pedicle. Loss of about 30%-40% of the bone mass must occur before the physician can detect the lesion on an x-ray. The loss of the pedicle bone will result in a “wink sign” (Figure 5).


What if the patient has an infection?
An infection will occur within the intervertebral disc space (Figure 6). The erythrocyte sedimentation rate (ESR) and C-reactive protein (CRP) levels will be elevated. Only 50% of the cases will have a fever, and less than 50% of cases will have an elevated white blood cell (WBC) count. The physician will need to get a blood culture (this is positive in about 24% of the cases). They will also need to get an MRI and administer antibiotics as guided by the biopsy, culture and sensitivity.


If the patient has an epidural abscess, surgery will be performed, especially if there is deterioration of the neurological function (Figure 7). If there is an infection post-surgery, it may be diagnosed with a higher C-reactive protein (CRP).


Osteoporotic bone is at risk of fracture, beginning with the wrist, the spine and followed by the hip (Figure 8). So, if the patient has an osteoporotic spine, it will need to be treated before it leads to a hip fracture later on. One fracture of the spine will lead to multiple spine fractures. After one year of treatment with medication, the incidence of a vertebral fracture is decreased by 60%. After two years, the incidence of a vertebral fracture is decreased by 40%.


In general, when the patient has low back pain, it is necessary to treat the patient conservatively. The doctor does not need to get x-rays in the first 4-6 weeks unless there are “red flags” including: the patient is older, the patient has a metastatic tumor or history of cancer, infection is suspected, the patient has trauma or there is an osteoporotic fracture possibly due to steroid use.

The physician may see an x-ray that looks like ankylosing spondylitis (Figure 9). They will need to check the SI joint because ankylosing spondylitis begins at the SI joint. The may get HLA-B27 and will find that there are marginal syndesmophytes with diffuse ossification of the disc space without large osteophyte formation. Ankylosing spondylitis is different from Diffuse Idiopathic Skeletal Hyperostosis (DISH), which occurs in diabetics, in this case the physician will get an HbA1c. Syndesmophytes are non-marginal and have larger osteophytes. It is the DISH which will have flowing ossification along the anterolateral aspect of at least four continuous vertebra. DISH is not ankylosing spondylitis (Figure 10)!



An MRI of the spine will be obtained at a certain point, however, x-rays may be needed first. MRI results may be a problem! There are abnormal MRIs in asymptomatic patients (these are false positives). Approximately 35% of these false positives are seen in patients less than 40 years of age. 90% of positive MRIs in asymptomatic patients occur in patients over 60 years of age.

The second issue is the MRIs with gadolinium dye. Gadolinium will differentiate a disc from a scar. Both granulation tissue and the recurrent disc could look alike on a routine MRI. There will be contrast enhancement when there is granulation tissue because it is vascular. However, when there is a disc herniation, the dye will not enhance because the disc is a dead piece of tissue (avascular). When the doctor tries to differentiate between a recurrent disc and a scar, they will inject the dye and get the MRI. If there is a vascular enhancement, then it is granulation tissue and the patient will not need surgical intervention. If there is no enhancement, then it is a recurrent disc and it is avascular, which is why it does not enhance. If the recurrent disc is causing a lot of pain or symptoms to the patient, then the physician may need to discuss a repeated surgery with this patient.



Age does not affect disease activity, management in ankylosing spondylitis

Markers of disease activity and treatment trends appear to be similar among geriatric patients with ankylosing spondylitis compared with younger counterparts with the same condition, according to findings presented at the American College of Rheumatology Annual Meeting.

“Ankylosing spondylitis in the geriatric population tends to be underrepresented in the literature,” Ahmed Omar, MD, of the University of Toronto, told Healio Rheumatology. “But the geriatric population is increasing worldwide. We need more research into this patient population.”

Omar and colleagues collected data from a longitudinal, Toronto-based cohort of patients with spondyloarthropathies. Geriatric patients were categorized as those at least 65 years of age and non-geriatric patients were those younger than 65 years. Data from a tertiary care orthopedics clinic in Toronto were used as an age-matched geriatric control group of patients without ankylosing spondylitis (AS).

“It is important to point out that this study did not aim to specifically look at ‘late onset AS,’” Omar said. “We aimed to develop a profile of patients who have AS and happen to be elderly, whether they developed the condition early or later in their lives.”

The investigators compared clinical and laboratory data between cohorts.

A total of 890 patients with AS were identified; 48 patients were classified as geriatric. The non-AS geriatric comparison group included 322 patients with knee osteoarthritis (OA).

Preliminary comparisons between young and geriatric patients with AS demonstrated no differences in gender distribution, although geriatric patients with AS tended to be older at the time of diagnosis (P < .001). The younger population was diagnosed earlier than the elderly group, which may reflect greater disease awareness among physicians in recent years, according to the study results.

No differences in clinical activity were observed between the groups, including mean inflammatory markers or Bath Ankylosing Spondylitis Disease Activity Index (BASDAI) scores. Extra-articular manifestations were also similar between the geriatric and non-geriatric patients with AS.

No significant differences between the two groups were observed with regard to use of NSAIDs, disease-modifying antirheumatic drugs, corticosteroids and biologics, or in side effects associated with the agents. Investigators found 1% of patients in the geriatric group began biologic therapy at 65 years of age or older.

“Standard precautions regarding age-related pharmacokinetics still apply, but the results suggest it may not be necessary to avoid using certain immunomodulating agents in geriatric patients with AS,” Omar said. “In general, there may be a tendency to undertreat elderly patients due to concerns about drug-related side effects, but more research is required to better understand the way we can, and should, use these drugs in the elderly, as earlier trials tend to favor younger populations. Real-world, registry-based studies are a valuable resource that can help address some research questions, but we also need more prospective studies and clinical trials that cater to this specific age group.”

Mobility, as measured by the Bath Ankylosing Spondylitis Metrology Index (BASMI), and function, as measured by the Bath Ankylosing Spondylitis Functional Index (BASFI), were higher among geriatric patients with AS (BASMI, P < .001; BASFI, P < .04), indicating greater restricted spinal mobility and greater impact on function in the geriatric patient with AS. These patients were also more likely to have a history of physical trauma and/or injury (P = .03) and have a higher score on the SF-36 Health Survey. Quality of life scores were similar between groups.

There were more men in the group of patients with AS when the geriatric patients with AS and the geriatric patients with OA were compared. Patients without AS were more likely to smoke and have a history of diabetes (P = .04), as well as have greater functional disability scores. Rates of infection were similar between the groups.

“We show that geriatric patients with AS have similar treatment and disease activity parameters, but differ in a select few functional components and comorbidities when compared with the younger population,” the researchers wrote. “Further research into the geriatric AS population is needed to better define and manage this group’s specific needs.



Causes of Pelvic And Back Pain – Ankylosing Spondylitis


The most common cause of lower back and pelvic pain is lifting an object that is too heavy, according to the American Academy of Family Physicians. Traumatic injuries and certain medical conditions can also cause discomfort in these areas. A common pain-generator for both lower back and pelvis pain is the sacroiliac or SI joint–the joint between the sacrum and the innominates, or hip bones, at the base of the spine. Many conditions can cause pelvic and back pain.

Ankylosing Spondylitis

Ankylosing spondylitis can cause back and pelvis pain. According MedlinePlus, ankylosing spondylitis is a type of arthritis that affects the spine and other joints throughout the body. Ankylosing spondylitis causes swelling in the intervertebral discs, the spinal facet joints and the sacroiliac joints in the pelvis. Ankylosing spondylitis is an autoimmune condition, which means that it causes the immune system to attack the very tissues it should be protecting. Ankylosing spondylitis occurs more frequently in men than women. The condition is also more severe in men and tends to run in families.

Common signs and symptoms associated with ankylosing spondylitis include chronic back and hip pain and stiffness, a stooped posture, weight loss, anorexia or loss of appetite, eye inflammation and bowel inflammation.

Sacroiliac Joint Dysfunction

Sacroiliac joint dysfunction can cause back and pelvis pain. The website Spine Health states that dysfunction or aberrant motion in the sacroiliac joint may cause low back, pelvis and leg pain. While the exact cause of sacroiliac joint dysfunction-related pain is unclear, it’s believed that too little joint movement or too much joint movement plays a significant role. According to the site, Sports Injury Clinic, sacroiliac joint dysfunction can be caused by trauma, biomechanical problems, hormonal imbalances or inflammatory joint disease.

Common signs and symptoms associated with sacroiliac joint dysfunction include aching or sharp pain on one or both sides of the lower back, pain that radiates into the buttocks, difficulty performing certain activities of daily living such as putting on shoes or turning over in bed and tenderness in the ligaments surrounding the sacroiliac joints. Spine Health notes that sacroiliac joint dysfunction occurs most frequently in young and middle-aged women.


Pregnancy can cause back and pelvis pain. According to the American Pregnancy Association, pelvic and back pain are among the most common pregnancy-related conditions. The APA reports that between 50 and 70 percent of all pregnant women experience at least some back and pelvis pain during their pregnancy. Although back and pelvis pain can occur at any point during a pregnancy, it’s most common in the third trimester, when the weight of the unborn child is reaching its maximum.

According to the APA, there are five principle causes of back and pelvis pain during pregnancy, including ligament laxity due to increased hormone production, an altered center of gravity, additional body weight for the back to support, faulty posture and increased stress. Exercises approved by a qualified health care professional can help prevent or reduce pregnancy-related back and pelvis pain.



Patients With Ankylosing Spondylitis Have Increased Cardiovascular and Cerebrovascular Mortality: A Population-Based Study

Background:Ankylosing spondylitis (AS) is a chronic inflammatory arthritis affecting the spine in young adults. It is associated with excess cardiovascular and cerebrovascular morbidity.

Objective:To determine whether patients with AS are at increased risk for cardiovascular and cerebrovascular mortality.

Design:Population-based retrospective cohort study using administrative health data.

Setting:Ontario, Canada.

Patients:21 473 patients with AS aged 15 years or older and 86 606 comparators without AS, matched for age, sex, and location of residence.

Measurements:The primary outcome was a composite of cardiovascular and cerebrovascular death. Hazard ratios (HRs) for vascular death were calculated; adjusted for history of cancer, diabetes, dementia, inflammatory bowel disease, hypertension, chronic kidney disease, and peripheral vascular disease; and, among those aged 66 years or older, relevant drug therapies. Independent risk factors for vascular mortality were identified in patients with AS.

Results:The mean age of patients with AS was 46 years, and 53% were male. Patients and comparators were followed for 166 920 and 686 461 patient-years, respectively. Adjusted HRs for vascular death in AS were 1.36 (95% CI, 1.13 to 1.65) overall, 1.46 (CI, 1.13 to 1.87) in men, and 1.24 (CI, 0.92 to 1.67) in women. Significant risk factors for vascular death were age; male sex; lower income; dementia; chronic kidney disease; peripheral vascular disease; and, among patients aged 65 years or older, lack of exposure to nonsteroidal anti-inflammatory drugs and statins.

Limitation:Diagnosis codes for AS were not validated in Ontario.

Conclusion:Ankylosing spondylitis is associated with increased risk for vascular mortality. A comprehensive strategy to screen and treat modifiable vascular risk factors in AS is needed.



Indonesian woman’s rigid spine from Ankylosing Spondylitis

An Indonesian woman who suffers from a rare that has left her completely unable to move.

Pictures show 35-year-old Sulami a woman from the Sragen area of Central Java, in the grip of a disease known as ‘bamboo spine’ that has turned her completely rigid.

An Indonesian woman who suffers from a rare condition that has left her completely unable to move

Pictures show 35-year-old Sulami a woman from the Sragen area of Central Java, is suffering from a disease that has turned her completely rigid

Pictures show 35-year-old Sulami a woman from the Sragen area of Central Java, is suffering from a disease that has turned her completely rigid

According to the Health Department of Sragen, Sulami’s suffers from a rare genetic disorder, Ankylosing Spondylitis.

Her condition is so bad that she has to rely on help from her 90-year-old grandmother, Suginem, to care for her.

For the last 10 years, Sulami has not able to sit or even bend over her body, and has to use a stick in order to help her walk.

According to the Health Department of Sragen, Sulami's suffers from a rare genetic disorder, Ankylosing Spondylitis

According to the Health Department of Sragen, Sulami’s suffers from a rare genetic disorder, Ankylosing Spondylitis

Her condition is so bad that she has to rely on help from her 90-year-old grandmother, Suginem, to care for her

Her condition is so bad that she has to rely on help from her 90-year-old grandmother, Suginem, to care for her

For the last 10 years, Sulami has not able to sit or even bend over her body, and has to use a stick in order to help her walk 

For the last 10 years, Sulami has not able to sit or even bend over her body, and has to use a stick in order to help her walk


Ankylosing Spondylitis occurs when the spine and other areas of the body become inflamed.

It can initially cause back pain, stiffness and extreme fatigue.

There is no cure for AS and it’s not possible to reverse the damage caused by the condition.

However, treatment is available to relieve the symptoms and help prevent or delay its progression. In most cases treatment involves a combination of exercise, physiotherapy, and medication.

Around 70 to 90 per cent of people with AS remain fully independent, but in the worst cases it can leave people incapable of moving.

It does not effect life expectancy itself but is know to trigger other serious conditions, such as cardiovascular disease, spinal fractures, chest infections and kidney disease.



A Diagnostic Challenge: When Fibromyalgia Coexists with Ankylosing Spondylitis

A recent study published online in a supplement to Arthritis & Rheumatology looked at the prevalence of fibromyalgia among patients with ankylosing spondylitis, finding a high prevalence, at 43%. Lead investigator Marina N. Magrey, MD, of Case Western Reserve University and MetroHealth Medical Center in Cleveland here describes the study findings. Click here to download a detailed abstract of this study.

Further discussion of fibromyalgia in the context of other chronic disease is provided by Carmen Gota, MD, of Cleveland Clinic.

Magrey: We did this study to answer a very important clinical question, whether tools of disease activity in ankylosing spondylitis measure just the inflammatory pain or do they even measure fibromyalgia pain?

Ankylosing spondylitis is … it’s a chronic inflammatory disease that predominantly involves axial skeleton and is associated with human leukocytic antigen B27. It’s characterized by inflammation in the spine, peripheral joints, and entheses, resulting in pain, fatigue, and stiffness.

So despite significant progress made in the treatment of ankylosing spondylitis, there are many patients who continue to have persistent pain, and this pain may be related to their disease activity or may be unrelated to their disease activity, and in those patients, we think the pain may be coming from this chronic, nonarticular fibromyalgia syndrome.

It’s very important for the clinician to actually be able to detect fibromyalgia in these patients, because based on that, they could decide whether they want to continue treating these patients or de-escalate these patients.

Tools for Measurement

Now we do have two very reliable tools of disease activity in ankylosing spondylitis called Bath Ankylosing Spondylitis Disease Activity Index (BASDAI) and ASDAS. Both of these are patient-reported outcomes. ASDAS is an improved version of BASDAI, because it not only incorporates the patient-reported outcomes, but it also includes in it ESR and CRP, which is … values, which are more objectively reflecting inflammation.

Both of these tools measure fatigue, stiffness, back pain, tenderness, and peripheral joint pain. There have been some studies in the past which have actually shown that the Bath Ankylosing Spondylitis Disease Activity Index may not be specifically measuring inflammatory pain and may actually be measuring fibromyalgia pain. So we were kind of quite intrigued since we routinely use these tools in our clinical practice to assess disease activity to test whether they were really measuring fibromyalgia pain or not.

So we can hypothesize that these patient-reported outcome disease activity tools in AS, actually not only measure inflammatory pain, but were also measuring fibromyalgia pain and severity. So based on this hypothesis, we decided to test this in a proper study.

It was a cross-sectional prospective study. We prospectively enrolled 62 patients with ankylosing spondylitis from our arthritis clinic. In order to get included in the study, the patient should have been at least 18 years of age and had to fulfill New York classification criteria for ankylosing spondylitis and had to have grade 3 or grade 4 sacroiliitis. We wanted to make sure that the patients had established ankylosing spondylitis.

Then we administered these patient-reported outcome tools such as disease activity to these patients. We also measured their ESR and CRP, which are routinely used to assess disease activity by rheumatologists. To measure the frequency of fibromyalgia in these patients, we based it on 2010 ACR diagnostic criteria for fibromyalgia and asked the patients to record their widespread pain index scores and symptom severity scores.

The Study Results

So the results of the study were quite surprising. So we found about 27 out of the 62 patients fulfilled the 2010 diagnostic criteria for fibromyalgia, the ACR diagnostic criteria for fibromyalgia. So the estimated prevalence based on this was pretty high. It was much higher than we had seen in … has been seen in previous studies.

The two groups of patients with fibromyalgia and without fibromyalgia were not much different, at least in terms of age. The median age was about 49 years, and there was no difference in gender. There was no difference in use of biologics between the two groups. The only significant difference that we found between the two groups was that African Americans were more likely to have fibromyalgia compared to Caucasians.

Our main aim of the study was to test the relationship between BASDAI and ASDAS scores with that of widespread pain index and symptom severity scores using logistic regression analysis. We did not find any significant association between these two scores. We did not even find any association between ESR and CRP and widespread pain index and symptom severity scores, so we were unable to prove our hypothesis.

We do acknowledge some limitations of the study. The limitations are that, firstly, it was a small cohort of patients. Another, that our patients who were included in the study had very high disease activity index and which may have caused some kind of bias. Hence, the prevalence … estimated prevalence of fibromyalgia, which we detected, was very high.

So to … for practical purposes, the study helped us 1) that those patients with ankylosing spondylitis with a very high disease activity scores, the clinicians should look for fibromyalgia symptoms in these patients because we found those patients who had very high disease activity scores tend to have more fibromyalgia than patients whose disease activity scores were low. And there’s a plausible explanation for that, because these are the patients who are in pain, and when they’re in pain, they may not be sleeping well. They may not be able to do enough physical activity.

Another thing is that we found that both BASDAI and ASDAS are useful, reliable tools of disease activity in AS, hence, should be routinely used in the clinical practice to gauge treatment.

Gota: Fibromyalgia is a biopsychosocial disorder and it can be associated with a lot of other medical conditions. Patients with fibromyalgia have widespread pain, have nocturnal pain, have a lot of morning stiffness, have fatigue, and a lot of other symptoms like neurological symptoms, neurologic type pain, difficulty with memory and concentration, and oftentimes they have associated depression and anxiety or other mood disorders.

The symptoms of autoimmune disorders and other inflammatory diseases can also be those of chronic pain. They can also be associated with nocturnal pain, morning stiffness, and fatigue. The presence of pain can affect how people will sleep. So sometimes for the clinician it’s difficult to differentiate which one is the reason for the patient’s complaints.

If you look at people with chronic conditions, for instance rheumatoid arthritis, about 20% of those patients probably have fibromyalgia. The percentage depends on the study and the way fibromyalgia was assessed. If you look at the literature in ankylosing spondylitis or psoriatic arthritis — the seronegative spondyloarthropathies — it’s about 15%, but there’s one study that shows a higher percentage. This was a study of ankylosing spondylitis in females, and they reported about 50% of those patients also had fibromyalgia. So in patients with chronic illnesses the prevalence of fibromyalgia is higher. We believe that’s happening at least partially because these are chronic stressors.

Diagnosing Fibromyalgia

You can diagnose fibromyalgia in several ways. The most important thing is by discussion with the patient. At the time of the clinical encounter when you listen to the patient, how the patient describes the pain and the associated symptoms, you get a sense that the fibromyalgia may be an issue. The most important aspects that make you think somebody has fibromyalgia are as follows. One, the pain is going on for a long period of time. Also the pain is generally widespread. It affects the back, the upper extremities, lower extremities, sometimes chest, abdomen. And there are features of the pain that are very suggestive of fibromyalgia. The pain occurs with rest. It’s worse after exertion but has some degree of improvement with activity.

It’s also strongly associated … when the patients describe the pain they use a lot of color. They describe it oftentimes in dramatic terms — stabbing, burning, unbearable, and often they use what we call neuropathic characteristics for the pain. So patients will say it’s burning, tingling, which is a little different from other conditions like rheumatoid arthritis where these kinds of neuropathic aspects are missing.

Also the pain is almost always associated with fatigue. These patients have a lot of fatigue, they have nonrestorative sleep, and they also describe, which untrained clinicians are not aware of, a lot of stiffness. In our patient population at the Cleveland Clinic, we found that about 60% of patients with fibromyalgia reported morning stiffness of more than an hour. So that can sometimes be confusing because we usually associate morning stiffness with inflammatory conditions.

This Study’s Findings

Well their results are surprising if you look at several other papers. There is one recently that was published in September from France, where they looked at patients with ankylosing spondylitis, they looked at patients with psoriatic arthritis, and the prevalence was about 15% of comorbidity between fibromyalgia and spondyloarthropathy. I don’t know why this study found such a high prevalence. It is well known that women who have ankylosing spondylitis have a higher prevalence of fibromyalgia than men with ankylosing spondylitis, but that was not what this study showed. This was just an abstract that was published and we are awaiting the more detailed publication about how the patients were recruited.

From what I read in the abstract, the criteria for fibromyalgia were the American College of Rheumatology 2010 criteria. If you look at these criteria, it’s composed of two subsets. One is the widespread pain index. That measures pain in different body parts. They’re supposed to be nonarticular but sometimes patients cannot make that differentiation. And the areas involve the upper neck, upper back, lower back, upper extremities, lower extremities, and those are also areas that hurt in ankylosing spondylitis. The other part of the American College of Rheumatology criteria includes the symptom severity score and that has four questions that grade the severity of fatigue, the severity of cognitive problems, the difficulty with sleep, and then a set of other somatic symptoms.

You can see that fatigue can occur in both patients with ankylosing spondylitis but also in fibromyalgia. A lot of the pain in ankylosing spondylitis is nocturnal so it’s imaginable that a lot of these patients don’t sleep well even if they do not have fibromyalgia. So my personal opinion, what I think in this study, is that probably the American College of Rheumatology 2010 criteria for fibromyalgia may be difficult to apply as a diagnostic tool for fibromyalgia in this subset of patients with ankylosing spondylitis because of the similarity of symptoms. So I’m not sure that these criteria correctly identify patients with fibromyalgia.

If you look at the data, patients who had ankylosing spondylitis and fibromyalgia also had higher C-reactive protein and higher sedimentation rates than the ones who didn’t, which is hard to interpret and definitely cannot be attributed to fibromyalgia. And if you look at prior studies, what they found was that actually using the CRP as a measure of disease activity was helpful in differentiating ankylosing spondylitis from fibromyalgia.

Contextual Factors

There was a very nice editorial in the Journal of Rheumatology that was associated with the article I mentioned previously from France looking at the prevalence of fibromyalgia and spondyloarthropathy. They used the term ‘contextual factors.’ So you always have to look at the whole patient. Fibromyalgia patients usually have pain for a long time, but they don’t only have pain. They also have a lot of other issues. They usually have a lot of stress in their lives. A lot of these patients have prior traumatic events. A lot of patients endure depressive symptoms, they do not sleep well, they report a lot of stiffness.

It’s very important when we consider fibromyalgia to take into consideration other factors that we may call contextual factors. Patients with fibromyalgia oftentimes have a lot of stress, their symptoms have been going on for a long time, they have disturbed sleep, and they often endure depressive and anxiety symptoms. And they have other manifestations such as symptoms of irritable bowel syndrome, migraine, which can be very helpful in understanding that this is probably fibromyalgia.

I think that patients who have both fibromyalgia and ankylosing spondylitis or other inflammatory diseases can pose a challenge for the clinician. I think the most important thing is to take a good history, listen carefully to the patient, do a complete physical examination, and oftentimes that is very helpful in differentiating the two or being able to recognize that there is more than one mechanism at play.



LAS VEGAS, NV - SEPTEMBER 30:  Singer/drummer Dan Reynolds of Imagine Dragons performs during the third annual Tyler Robinson Foundation gala benefiting families affected by pediatric cancer at Caesars Palace on September 30, 2016 in Las Vegas, Nevada.  (Photo by Ethan Miller/Getty Images)

My Hidden Disease: I Have Ankylosing Spondylitis And I’m Not Alone

Empathy, sadness, joy and a sense of family are just some of the immediate feelings I had when I ended my FaceTime conversation with Dan Reynolds, lead singer of Imagine Dragons.

Dan and I have something in common called ankylosing spondylitis, or AS for short. Instead of getting into a long, drawn-out medical definition, I will describe it like this: our bodies are attacking themselves, and there is no cure.

People suffer in silence and feel they are alone because they think no one understands.

Most of us AS sufferers have to deal with chronic pain 24/7. It is a “hidden disease,” as Dan labelled it. Dan is a now a spokesperson for our disease through an awareness campaign launched in collaboration between the Spondylitis Association of America (SAA) and Novartis Pharmaceuticals (U.S.). They provided me this amazing opportunity to speak with Dan, not on a musician/star basis, but on a personal one.

Dan and I were diagnosed with AS almost at the same time. When I was listening to him speak, I began to feel an immediate connection. Dan knew he had AS for almost a decade before announcing it to tens of thousands in First Direct Arena in Leeds, England on Nov. 10, 2015.

“I didn’t want the world to know for fear it would be a weakness… I don’t really know honestly why (I shared my AS on stage), but I don’t regret it,” he told me.

This statement resonated so much with me. For some reason in this world, no one is allowed to show vulnerability even if they’re ill. People with a lot of different diseases suffer in silence and feel they are alone because they think no one understands.

I have a disease that no one can see. AS can affect every joint in your body, your internal organs and your mental health. I unfortunately know people who have ended their lives. They just couldn’t take their AS struggle anymore.

People who suffer from AS tend to become family, whether they want to or not.

I am amazed at the way Dan looks at AS. He is so full of positivity and wants to be a voice for all of us that have it. I alone couldn’t think of a better spokesperson for us “AS Warriors,” as we like to call ourselves.

People who suffer from AS tend to become family, whether they want to or not. We are the only ones who truly understand what we are going through — from restless nights, to being too sore to leave the house, to missing out on fun activities with friends.

dan reynolds
Dan Reynolds of Imagine Dragons on Sept. 30, 2016 in Las Vegas, Nevada. (Photo: Ethan Miller/Getty Images)

Dan was very adamant and wanted people to know “you aren’t alone, there is a community out there.”

I can’t stress this point enough. We have both felt alone, even with family around. It isn’t the same trying to explain what you are going through to someone who isn’t dealing with AS. Dan emphasized, “You need to find comfort in other people’s stories… now I really want to do all I can, to be a voice for it and to spread awareness so people don’t feel so alone.”

Dan accepts that as a spokesperson, people like me may now approach him for advice. “I hope people go to their rheumatologists and not to Doctor Dan, ’cause I got nothing,” he quipped. But my lasting impression of Dan is that in life lessons, he knows a great deal. Throughout his struggle with AS, Dan speaks about how very supportive his wife is and how even his four-year-old daughter knows how to pronounce ankylosing spondylitis.

dawn hamilton as
Dawn Hamilton lives in St. Catharines, Ontario and was diagnosed with AS in 2008.

I was excited to learn the Imagine Dragons may be going on tour in 2017. I can’t wait to see the tour list. Dan mentioned that AS had “fed the creative part” of him when it came to music, and it gave him “passion to create more music.”

AS affects every part of our life. As a creative musician, Dan’s lyrics, music and even performance are directly impacted by AS.

“Emotion is what breeds art and I definitely had emotions, someone telling you, you have a disease that could possibly ruin your life,” he said. When you have a chronic ailment, your emotions tend to be all over the place — and sometimes you take it out on the people you are closest to.

Although I only spoke with Dan for minutes, I feel like I’ve made a life-long friend.

Our discussion wasn’t all serious, though. When I asked if he would ever write a song about AS, he immediately burst into song. “I think it has already been fused into many songs whether I knew it or not,” he said. I now think it is time for me to listen a bit closer to the lyrics of Imagine Dragons and see what I can hear.

Although I only spoke with Dan for minutes, I feel like I’ve made a life-long friend. I will probably never be able to talk to Dan again, but I know he’s out there rooting for all of us. And now, we’re all inspired by his music, his courage and his life with AS.




Uveitis in Ankylosing Spondylitis : Risk Factors Identified

Uveitis should be suspected in patients with ankylosing spondylitis (AS) who have high lesion counts, antistreptolysin O (ASO) and circulating immune complex (CIC) titers, according to retrospective research presented at the 2016 ACR/ARHP Annual Meeting.

“This study provides some evidence that hip-joint lesion, the number of peripheral arthritis, ASO and CIC may be associated with higher rates of uveitis in AS,” reported Feng Wang, MD, of the Nephrology and Rheumatology Department, Shanghai Jiao Tong University Affiliated Sixth People’s Hospital in Shanghai, China. “The results of this comprehensive analysis suggest that the possible occurrence of uveitis in AS should not be neglected in patients who have those concomitant risk factors.”

The authors enrolled 390 patients with AS and ophthalmologist-diagnosed uveitis (80.5% male; mean age 33.3 years), between January and December 2015. Disease duration, HLA-B27, and peripheral hip-joint lesion counts were retrieved from medical records and imaging exams, and biochemical function labs were conducted.

Thirty-eight (9.7%) patients experienced at least one uveitis episode, and hip-joint lesions occurred at a higher incidence rate among these patients than those with no history of uveitis, the authors reported (44.7% vs. 22.2%; P<0.01). Patients in the uveitis-history study group also had higher peripheral arthritic lesion counts (2.18±0.23 vs. 0.55±0.04; OR, 4.1; 95%CI: 2.6-6.3; P<0.01), ASO (odds ratio [OR], 12.2; 95% CI:3.6-41.3; P<0.01), and CIC (P<0.0001).

“However, there were no significant differences in disease duration, HLA-B27, erythrocyte sedimentation rate (ESR) and C-reactive protein (CRP) between the two groups,” the researchers found.