Little Known Facts
1. AS and Rheumatoid Arthritis both are attributed to having higher than normal levels of serum copper during periods of activity and inflammation. Other types of arthritis do not have this same association to high levels of copper in the blood. It is believed that the higher than normal levels of copper are a response to severe inflammation. Both of these diseases respond to Penicillamine, a copper mobilising drug, whereas other types of arthritis do not seem to respond to this drug.
2. Ankylosing Spondylitis patients sometimes resort to taking medications that suppress the immune system, such as steroids or biologics or various inhibitors (TNF or IL inhibitors) that inhibit certain aspects of the immune system. If you happen to be one of these patients, you must be very cautious about taking any vaccines, such as an annual flu vaccine for example. You should always consult with your doctor before taking any vaccines when you are on immune-suppressing medications. While this news may not be new to some AS patients, many patients do not realize that even their family members living in the same household must be careful WHICH types of vaccines they receive. This is because some vaccines, such as the inhaled flu vaccine, contain live viruses. Although the immune system of this family member might be working well and your house mate might not have symptoms as a result of the vaccine, you could contract the virus from them and have severe symptoms because your immune system is suppressed. The information pamphlet provided by the pharmacy that comes along with your prednisone prescription, for example, often warns “avoid contact with people who have recently received live vaccines (such as flu vaccine inhaled through the nose).”
3. Patients with Ankylosing Spondylitis are at a higher risk for developing an unusual condition that is generally considered rare called “neck-tongue syndrome”. This uncommon disorder is characterized by an acute pain where the head and neck attach (occipital region) combined with a numbness of the tongue. The episodes typically last for seconds up to 1 minute and usually are precipitated by certain movements of the neck, usually rotation. The symptoms are believed to be caused from a subluxation of the C-2 joint, which affects nerves that go to the tongue. In some cases, patients may also describe these symptoms: jaw pain, a sensation of choking, pressure in the ear, or excessive salivation. Treatment usually involves nerve root resection, fusion of the upper 2 cervical vertebrae, wearing a cervical collar, stabilizing exercises for the musculature of the neck, steroid injections, or in cases where there is no cervical instability, chiropractic adjustments (usually not an option for AS patients). Although the condition is generally considered rare, some professionals have said that the symptoms, when they are associated with cervical arthritis, are NOT rare and are just “submerged in the plethora of neck-related symptoms.”
(P.K. Maheshwari, Anjana Pandey. Unusual Headaches. Ann Neurosci. 2012 Oct; 19(4): 172–176.
doi: 10.5214/ans.0972.7531.190409; and Cameron Borody. Neck-Tongue Syndrome. DOI:
4. In the UK, twice as many people who have Parkinsons Disease have Ankylosing Spondylitis. Likewise, twice as many people who have MS have Ankylosing Spondylitis.
5. Although the HLA-B27 gene is found in 90-95% of all patients with AS, there are 2 types (alleles) of HLA-B27 which are NOT associated with Ankylosing Spondylitis, and that is HLA-B27-06, which is predominantly found in Asia and HLA-B27-09, which is found in Sardinia. Other subypes of HLA-B27 are being studied.
6. Along with the HLA-B27 gene, the ERAP1 gene also is associated with AS. When the ERAP1 gene looses its function, this is protective in preventing the symptoms of AS. Therefore, the gain or loss of ERAP1 function is one of the determining factors that influences whether or not an HLA-B27 patient goes on to contract Ankylosing Spondylitis or not.
(Florence Tsui, Hing Wo Tsui, Ali Akram, Nigil Haroon, Robert Inman. The Genetic Basis of Ankylosing Spondylitis: New Insights Into Disease Pathogenesis. Appl Clin Genet. 2014; 7: 105–115.
Published online 2014 May 22. doi: 10.2147/TACG.S37325)
7. Juvenile Ankylosing Spondylitis is not widely known about because AS typically presents itself in patients between the ages of 20 and 45 years of age. However, there are a surprising number of children and teenagers who exhibit the disease. In fact, 10-20% of patients with AS develop symptoms before the age of 17 and are considered to have Juvenile Ankylosing Spondylitis (JAS). JAS usually first presents itself with manifestations of peripheral arthritic pain, whereas adult onset AS usually first presents with axial pain. Patients with Juvenile AS typically have higher C-reaction protein and SED rates (markers for inflammation) than patients with adult onset AS, as well as more radiographic changes of the hip joints. A higher percentage of patients with JAS are male rather than female in comparison to the male to female ratio of adult-onset AS patients. Although there have been 5 year olds with the diagnosis of JAS, the youngest case of Juvenile AS with confirmed severe sacroiliitis is a 6 year old male who had a 3 year history of severe back and leg pain.
(Lin YC, Liang TH, Chen WS, Lin HY. Differences Between Juvenile-Onset Ankylosing Spondylitis and Adult-Onset Ankylosing Spondylitis. J Chin Med Assoc. 2009 Nov;72(11):573-80. doi: 10.1016/S1726-4901(09)70432-0.
G. Edstrom, S. Thune, G. Wittbom-Cigen. Juvenile Ankylosing Spondylitis. Research article in the journal Acta Rheumatologica Scandinavica, pages 161-173, published Nov 10 2014, https://doi.org/10.3109/rhe1.1960.6.issue-1-4.18
Golda H. Hartman, Deborah Renaud, Murali Sundaram, Ann Reed. Spondyloarthropathy presenting at a young age: case report and review. Skeletal Radiology. Volume 36, Issue 2, pp 161–16)
8. Within 10 years of the onset of symptoms (not 10 years from the date of diagnosis, as this may be long after the onset of symptoms), 70 percent of patients diagnosed with inflammatory rheumatic diseases such as Ankylosing Spondylitis become disabled and unable to work. That number increases to 90 percent after more years. The disability, however, is not always due to inflammation, as one might suppose. The disability is often due to high levels of fatigue. Even when patients are given biological medications for months and inflammation has subsided, often the symptoms of fatigue prevail and persist.
(Katie Druce, Laraine Aikman, Maria Dilleen, Annie Burden, Annie Burden, Piotr Szczypa, Neil Basu.
Fatigue independently predicts different work disability dimensions in etanercept-treated rheumatoid arthritis and ankylosing spondylitis patients. Arthritis Research & Therapy 2018. )