Pain

A healthy spine is able to move in many directions, which is why you can bend, turn, and twist. The spinal bones are joined together by flexible ligaments and are separated by cushiony discs, which allow a lot of movement. Movement can become impossible if the ligaments calcify and the bones fuse together. This is why AS can be disabling in its advanced stages.

Often the first sign of AS is inflammation of the sacroiliac (SI) joints. The SI joints are the two joints that connect the lower spine to the pelvis. You can feel these joints about two inches to either side of the spine in the low back. It is the inflammation which causes the symtom of pain. Inflammation eventually moves to the spine. Long-term inflammation of the spinal joints starts a process of damage to the bone where the body continually tries to repair the damage with scar tissue and new bone tissue. As the process continues, the bone becomes weaker and weaker. When the inflammation finally "burns out" and begins to disappear, the body attempts to heal the bone by producing calcium deposits around the area of the damage. For some unclear reason, as the bone heals itself, the calcium deposits spread to the ligaments and discs between the vertebrae. This leads to a fusion of the spine, sometimes referred to as bony ankylosis.

Symptoms

Like other forms of arthritis, the symptoms of AS are from the effects of inflammation. Initially the symptoms may come and go for weeks or months at a time.

The first sign of AS is usually sacroiliitis (inflammation in the SI joints). This condition causes pain in the low back and buttock areas. There is often severe low back pain, along with buttock, hip, and thigh pain on one or both sides. It usually comes on gradually and gets worse with time. Stiffness and low back pain commonly occur in the morning and ease with activity over the course of the day. Prolonged rest, such as lying down or sitting for any length of time, worsens the symptoms of AS, which is different from some other forms of low back pain that are eased with rest.

Spine flexibility is reduced with AS, which can affect your ability to bend forward and backward. In the mid back, AS can affect the joints where the ribs connect to the vertebrae. These are called the costotransverse and costovertebral joints. Inflammation in these joints can cause pain in the chest wall and into the abdomen. Symptoms in the neck include stiffness, pain, and limited neck motion. Because AS attacks the joints of the body, synovitis can occur. Synovitis is a term used to describe inflammation of the synovial membrane (lining of the joints). Symptoms of synovitis include pain, stiffness, and swelling in any joint in the body.

Breathing can be affected as AS progresses. The disease can make the mid back round forward, a deformity called kyphosis. When this occurs, it can compress the lungs and make it increasingly difficult to take a breath. Also, when the disease affects the joints between the ribs and spine, the chest loses its ability to expand enough to take a full breath. Inflammation of the lungs can also occur with AS, making it even harder to breathe.

The eyes can be affected by AS. About 25 percent of AS patients develop iritis, a condition that is caused by inflammation of the iris. The iris is the colored part of your eye around the pupil. There may be pain and redness in the eye, but usually vision is not impaired.

The spine bones may eventually grow together, fusing into one continuous column of bone. This is due to calcification of the ligaments and discs between each vertebra. If the vertebrae fuse together, the spine is robbed of mobility, leaving the vertebrae brittle and vulnerable to fractures. When the spine becomes completely fused together, the pain in the spinal area usually goes away. This does not signal a remission of the disease. However, patients are left with no spinal mobility and brittle bones that are more likely to fracture. If pain suddenly reappears in the back after a long period of no pain, there may be a fractured vertebra.

TreatmentThe goal of treatment is to relieve pain and stiffness, and prevent or delay complications and spinal deformity. Treatment of ankylosing spondylitis is most successful early, before it causes irreversible damage to your joints, such as fusion, especially in positions that limit your function.

Medications
Your doctor may recommend that you take one or more of the following medications:

• Nonsteroidal anti-inflammatory drugs (NSAIDs). NSAIDs — such as naproxen (Naprosyn) and indomethacin (Indocin) — are the medications doctors most commonly use to treat ankylosing spondylitis. They can relieve your inflammation, pain and stiffness.
• Disease-modifying antirheumatic drugs (DMARDs). Your doctor may prescribe a DMARD, such as sulfasalazine (Azulfidine) or methotrexate (Rheumatrex), to treat inflamed joints and other tissues.
• Corticosteroids. These medications, such as prednisone, may suppress inflammation and slow joint damage in severe cases of ankylosing spondylitis. You usually take them orally, ideally for a limited period of time because of their side effects. Occasionally, corticosteroids are injected directly into a painful joint.
• Tumor necrosis factor (TNF) blockers. Doctors originally used TNF blockers to treat rheumatoid arthritis. TNF is a cytokine, or cell protein, that acts as an inflammatory agent in rheumatoid arthritis. TNF blockers target or block this protein and can help reduce pain, stiffness, and tender or swollen joints. These medications, such as etanercept (Enbrel) and infliximab (Remicade), may decrease inflammation and improve pain and stiffness for people with ankylosing spondylitis.

Physical therapy
Physical therapy can provide a number of benefits, from pain relief to improved physical strength and flexibility. Safe movement can improve spine mobility and posture. Physical therapy assists in pain control and prevention of deformities from AS. Patients are advised against prolonged sitting and best rest and encouraged to keep their spine straight, walk erect, and avoid stooping over for long periods.

The goals of physical therapy are to help you:

• Learn correct posture and body movements to counteract rounding of the upper back (kyphosis)
• Use appropriate sleep positions upon a firm mattress and thin pillow
• Maintain appropriate activity levels
• Implement daily stretching and strengthening exercises
• Learn ways to manage your condition

As your condition worsens, your upper body may begin to stoop forward. Proper sleep and walking positions and abdominal and back exercises can help maintain your upright posture. Though you may develop spine stiffness despite your treatment, proper posture can help to ensure that your spine is fused in a fixed upright position.

Surgery
Most people with ankylosing spondylitis don't need surgery. Surgery may help if you have severe pain or joint damage. You may need surgery if a nonspinal joint needs to be replaced. However, doctors don't usually recommend back surgery.

Impact of pregnancy on health related quality of life

A Swiss research study (i) investigated patient experiences of the disease course and health related quality of life during and after pregnancy in 10 women with rheumatoid arthritis (RA) and 10 women with ankylosing spondylitis (AS). Twenty-nine age-matched healthy pregnant controls were evaluated by the medical outcomes study short form 36 (SF-36) health survey once at each trimester and at 6, 12, and 24 weeks postpartum. A group of non-pregnant age-matched female patients (40 RA, 16 AS) was studied for comparison.

Impaired physical dimensions as well as increased bodily pain was observed in healthy women in late pregnancy. Patients with rheumatoid arthritis showed improved physical functioning scores in the second trimester and reduced pain in the third trimester. Among pregnant patients, those with ankylosing spondylitis suffered the greatest impairment of health related quality of life during pregnancy. In all patient groups the physical impairment in the third trimester was less pronounced than in healthy controls. Mental health scores remained stable even with persisting active disease during pregnancy, or with a postpartum flare. Pregnancy reduced physical functioning in healthy women and patients, but had no impact on mental and emotional health, even at times of disease aggravation.

Another Swiss study (ii) demonstrated that most patients with RA showed sustained or increased improvement of disease activity during pregnancy. Higher disease activity scores were found in the patients with AS with a frequent increase of disease activity in the second trimester and mitigation of symptoms in the third trimester. Analysis specifically for the patient's assessment of pain showed continuously higher pain scores in the patients with AS than in those with RA. Rank correlation showed good to moderate correlation between most clinical measurements and RA Disease Activity Index (RADAI) or Bath Ankylosing Spondylitis Activity Index (BASDAI), respectively. Functional indices were confounded by physiological changes of late pregnancy..RA can be monitored during and after pregnancy by the swollen joint count and RADAI without interference from pregnancy related symptoms, whereas usual measures of disease activity are not always applicable in pregnant patients with AS.

References:

(i) Forger, F., Ostensen, M., Schumacher, A., and Villiger, P.M. (2005, Oct). Impact of pregnancy on health related quality of life evaluated prospectively in pregnant women with rheumatic diseases by the SF-36 health survey. Ann Rheum Dis. 64(10):1494-9.

(ii) Ostensen, M., Fuhrer, L., Mathieu, R., Seitz, M., and Villiger, P.M. (2004, Oct). A prospective study of pregnant patients with rheumatoid arthritis and ankylosing spondylitis using validated clinical instruments. Ann Rheum Dis. 63(10):1212-7.

AS Athlete: The Road to Kona

Rob Williams was diagnosed with ankylosing spondylitis in 1991 and was told by his doctor that he would never be able to run again. Despite this, Rob pushed himself toward a lifelong dream: To compete in the Ironman World Championship.
Visit his online training journal that will document his quest for the ultimate goal in triathlon. Rob will be sharing his thoughts and experiences with us while he attempts to qualify for the 2006 Ironman Championship in Kona, Hawaii.

If you wish to email Rob a question or a comment, you can do so by emailing him here: rideoutas@hotmail.com


The Road to Kona 2006 - The Beginning by Rob Williams

How many defining moments do you remember in your life? I have a few, but one came while sitting alone on my parents' bed watching television in 1982. The TV was an old machine that seemed to take 20 minutes to warm up, but once it did it was in color that was vaguely representative of the real world so I was excited. On this particular day I was watching ABC's Wide World of Sports and saw, for the first time, something called a triathlon - an Ironman triathlon no less (2.4 miles of swimming, 112 miles of cycling, and a marathon - 26.2 miles of running). Like thousands of people across the country I was moved by the sight of Julie Moss valiantly crawling towards the finish line in utter exhaustion having just missed a first place finish by a mere couple hundred yards. Like many, I watched that effort and thought, "I am going to do that someday."

If you fast forward 9 years I was given news that this would "never be possible." I found myself in my first year at Wesleyan University in Middletown Connecticut. I was recruited to play goalie on the soccer field and attack for lacrosse, but I was developing an insidious pain in my lower back that crept down the sciatic nerve in my right leg. Coach Jackson told me to take that first soccer season off to rehab and get ready for where he really wanted me, on the lacrosse field. I never made it back.

Despite my best efforts at a variety of therapies the pain would not diminish. Since it was an acute nerve pain it was not a matter of "playing through the pain" as my body would physically be unable to move at times. There was more than one occasion when my friends would have to carry me into the dorm shower in the morning to help warm me up enough to get moving. Needless to say my career on the field and my identity as an athlete was gone. By the spring of 1991 I saw a rheumatologist who diagnosed me with a strangely named disease and told me that I would be unable to run again.

Ankylosing Spondylitis - I had enough trouble pronouncing and spelling this arthritic condition, much less understanding what it was. Questions, anger, depression seemed to swarm about me constantly, and the Hawaiian lava fields of Kailua-Kona were not even a glimmer in my eye.

If you fast forward a few more years I was pursuing a Masters degree at Oregon State University. I decided in 1999 to try my first triathlon, a sprint distance event (500 yard swim - 12.4 mile bike - 3.1 mile run) called the Beaver Freezer. From there I tested my limits and improved my results. Over the years I worked my way up to mid-pack performances at the USA Triathlon Age Group National Championships, completed my first Ironman distance triathlon (Ultramax) in 2002, won my first bike race in 2003, and qualified as a representative for the US National Team by winning the USA Triathlon Pacific Northwest Regional Championships in 2004.

This is the beginning of a new and remarkable chapter in my life that I hope ends on Alii Drive at the Ironman World Championships in Kona, Hawaii; but first I have to qualify at Ironman Canada in Pentiction, British Columbia on August 27, 2006. This is the first of weekly entries into a training journal that will document my quest for the ultimate goal in triathlon.
In addition to following my training, this on-line journal will occasionally look back at past competitive events, watershed moments, and a cross-country cycling trip on a tandem bicycle to raise money and awareness for the Spondylitis Association of America.

History of AS: Bernard O'Connor

Three hundred years ago, on 30 October 1698, a young Irish doctor died in London from fever, possibly malaria, at the age of 32 years.

Bernard O'Connor was born in Kerry in 1666. At the age of 20 he went to France to study medicine, first at Montpelier and then at Rheims, graduating Doctor of Physic in 1693. He set up in practice in Paris but before long he was asked to accompany the sons of the chancellor of Poland on their journey home. They travelled through Italy, Germany and Austria, visiting leading medical centres on the way. Arriving in Warsaw early in 1694, O'Connor was introduced to the royal court and was invited to become personal physician to the king.

King John III Sobieski was one of the heroes of Poland and of Europe in the late 17th century. In 1673 he had defeated the invading Turks at Khotin. In 1683, allied to Austria, he again overwhelmed the Turks at Vienna, thus ending the threat of a successful Turkish occupation of Eastern Europe.

After nearly a year in Warsaw, O'Connor was on the move again. The King appointed him to escort his daughter to Brussels for her wedding with the Elector of Bavaria. While in the Low Countries he visited more medical centres before travelling to England. He set up practice in London, soon gaining a reputation as a teacher, and anglicising his name to Connor. He gave a course of lectures on medicine and natural philosophy at the University of Oxford in 1695 and was invited to lecture in Cambridge the following year. The Archbishop of Canterbury allowed Connor the use of his library for experiments.

The main interest of orthopaedic surgeons and of rheumatologists in Bernard O'Connor is that he was the first to describe Ankylosing spondylitis, although he did not give it a name. In a letter in French, published in Paris in 1693 he describes the appearance of part of a skeleton ; pelvis,lumbar and dorsal spine and ribs up to the mid thoracic level. An English translation of parts of the letter was published in Philosophical Transactions in 1695, and a Latin version was included in Connor's book "Dissertationes Medico-Physicae" published in Oxford in 1695.

"All of these Bones ...... were so straightly and intimately joyned, their Ligaments perfectly Bony and their articulations so effaced, that they really made but one continuous Bone.... The Figure of this Trunk was crooked, making part of a Circle...... If the other Vertebrae of the back and neck had been preserved, and had bent in the same Curve, they would have made near the half of a Circle...."

In London Connor published "Evangelium Medici" in 1697. This latter book was very controversial, some people claiming that Connor suggested natural explanations for some of the miracles in the Gospel. Connor had to defend himself against charges of heresy and wrote a long letter to his benefactor,the Archbishop of Canterbury. He also wrote to a friend: "I am resolv'd not to meddle any more with Matters of this kind, but to apply myself entirely to the Practice of Physick". Not the first, nor last, doctor to get "a belt of a crozier"!

Connor was elected a fellow of the Royal Society, a fellow of the Royal College of Physicians and Membre de l'Academie Francaise, remarkable achievements in such a short time. He became ill in October 1698 and died within a couple of weeks.

Further cases of ankylosing spondylitis with clinical descriptions were later published - Delpeche in 1828 and Strumpell in 1884. Pierre Marie gave a very full description in 1898, giving it the name "Ankylosis rhizomelique". The name "ankylosing spondylitis" was first used by C.W.Buckley in 1935.

My Health Update

I have been under an enormous amount of stress lately. Curious, I completed the Life Event Stress Scale which accounts for major life events that have taken place in ones life over a 12 month period. The scale shows the kind of life pressure being faced. Depending on ones coping skills or lack thereof, this scale can predict the likelihood of falling victim to a stress-related illness. A score of 300 or more indicates a high susceptibility to stress related illness, 150-299 is a medium susceptibility, and 0-149 is a low susceptibility. My score was 619. Some of my stressors over the last 12 months (score is in brackets) have included:

• Death of my Grandfather (63)
• Training for, and completing, my first marathon (?)
• Finishing my Masters (26)
• Divorce (73)
• Change to a different line of work (36)
• The sudden end of a contract due to department closure (?)
• Outstanding personal and professional achievement (28)
• Change in financial status (38)
• Change in the health of three family members (44x3)

The cumulation of these took their toll this weekend. I could not get out of bed until after 4pm as a result of extreme fatigue and mild stiffness. I am still suffering with iritis in my left eye. I have not felt such fatigue in a long time. My mind was alert and thinking of all the things I wanted to do, but my body felt like lead. Everything was an effort. I was planning to run 21K this morning in the 3rd annual Las Vegas North Half Marathon. By 2am last night, I knew it was not going to happen, and that caused me some anxiety (I hate not fulfilling a commitment).

I pride myself on my optimism; it shapes my perception of stressors and allows me to cope in healthy ways. I am confident that my flares are more managable as a result. Overall, I manage quite well and truly believe that everything happens for a reason; personally, I see every circumstance as an opportunity to learn or demonstrate something. I have often said that it is during the most difficult times that I learn the most about myself. One thing is for sure: I am very resilient. As with other things, I know I will bounce back from this flare.

The real face of AS

Etanercept 50 mg once weekly vs 25 mg twice weekly

According to research based out of the Netherlands, patients with ankylosing spondylitis can expect a comparable significant improvement in clinical outcomes with similar safety when treated with etanercept 50 mg once weekly or with 25 mg twice weekly. Significant improvement (p<0.05) was seen in measures of disease activity, back pain, morning stiffness and C reactive protein levels as early as 2 weeks. Incidence of treatment-emergent adverse events, including infections, was similar and no unexpected safety issues were identified.

References:

van der Heijde, D., et al. Etanercept 50 mg once weekly is as effective as 25 mg twice weekly in patients with ankylosing spondylitis. Ann Rheum Dis. 2006 Dec;65(12):1572-7. University Hospital Maastricht, Maastricht, The Netherlands.

Anti-Tumour Necrosis Factor

In ankylosing spondylitis (AS), there has been consistent benefit with the use of anti-TNF therapy, shown initially in pilot studies, open follow up studies, and, most importantly, in several randomised controlled trials. The cytokine, tumour necrosis factor-alpha (TNF-alpha) plays a key role in the pathogenesis of many chronic inflammatory and rheumatic diseases, in particular, Crohn's disease, rheumatoid arthritis (RA), AS, and psoriatic arthritis. Controlled trials have shown that the TNF inhibitors significantly reduce symptoms and signs, improve function and quality of life, and reduce radiologically evident damage in patients with rheumatoid diseases. The antitumor necrosis factor-alpha agents currently available, infliximab (Remicade), etanercept (Enbrel), and adalimumab (Humira), are approved for the treatment of RA in North America and partly in Europe.

The situation in spondyloarthritis is different from that of rheumatoid arthritis because there is an unmet medical need, especially in ankylosing spondylitis: no therapies with disease-modifying antirheumatic drugs are available for severely affected patients, especially with spinal disease. Thus, tumor necrosis factor blockers may even be considered a first-line treatment in a patient with active ankylosing spondylitis and psoriatic arthritis whose condition is not sufficiently controlled with nonsteroidal antiinflammatory drugs in the case of axial disease, and sulfasalazine or methotrexate in the case of peripheral arthritis. Results of the available clinical trials provide strong evidence of the clinical effectiveness of infliximab and etanercept, and are supported by continuation data of up to one year. Currently there is no other known disease controlling antirheumatic treatment for AS. This is in sharp contrast with RA, where many DMARDs are known to be effective.

For reasons that are not entirely clear, etanercept does not work in Crohn's disease. Infliximab was very recently approved for AS in Europe. The efficacy of etanercept was first demonstrated in psoriatic arthritis, and it is now approved for this indication. Injection site and intravenous reactions and increased risk of infection (in particular, reactivation of tuberculosis) are associated with the use of these agents. Guidelines are currently needed to ensure appropriate selection of patients suitable for anti-TNF therapy, which can lead to harm, with rare, but possible, side effects, such as increased risk of lymphoproliferative disease, the development of lupus-like syndromes and demyelination, including optic neuritis and reactivation of multiple sclerosis. The TNF inhibitors are expensive and in some patients need to be given continuously to maintain benefit, even in the presence of other immunosuppressive therapy.

There is hope that ankylosis may be preventable, but it remains to be shown whether patients benefit from long-term antitumor necrosis factor therapy and whether radiologic progression and ankylosis can be stopped. Rheumatologists consider both disease activity and severity to be determinants of starting TNF blockers. Severe adverse events have remained rare. Complicated infections including tuberculosis have been reported. These can be largely prevented by appropriate screening. There is need to identify patients with AS with active disease who are at increased risk of severe disease, with deterioration of functional capacities, and who therefore are the best candidates, as they have the most to gain from the use of anti-TNF treatment. As it stands now, the benefits of antitumor necrosis factor therapy in ankylosing spondylitis seem to outweigh these shortcomings.

The current long term experience with TNF blocker therapy in AS is now about five years. More data on long term treatment beyond two years are currently being collected. There is no evidence that the long term use of these agents must be discouraged, there is just a need for more data. Evidence for the consecutive use of different agents is limited. Therefore, successive use of different TNF blocker drugs cannot be recommended at the present time. As further data become available, these will be used to guide decision making.

The following recommendations were developed by a review of published reports in combination with expert opinion, including a Delphi exercise, and a consensus meeting of the ASsessments in AS (ASAS) Working Group

The final international consensus comprises the following requirements for the use of anti-tumour necrosis factor (anti-TNF) for treating patients with ankylosing spondylitis (AS):

1. For the initiation of anti-TNF therapy: (a) a diagnosis of definitive AS; (b) presence of active disease for at least four weeks as defined by both a sustained Bath AS Disease Activity Index (BASDAI) of at least 4 and an expert opinion based on clinical features, acute phase reactants, and imaging modalities; (c) presence of refractory disease defined by failure of at least two non-steroidal anti-inflammatory drugs during a single three month period, failure of intra-articular steroids if indicated, and failure of sulfasalazine in patients with peripheral arthritis; (d) application and implementation of the usual precautions and contraindications for biological therapy.
2. For the monitoring of anti-TNF therapy: both the BASDAI and the ASAS core set for clinical practice should be followed regularly.
3. For the discontinuation of anti-TNF therapy: in non-responders, consideration should be made after 6–12 weeks’ treatment. Response is defined as improvement of (a) at least 50% or 2 units (on a 0–10 scale) of the BASDAI, (b) expert opinion that treatment should be continued.

Infliximab

Infliximab is a monoclonal chimeric human anti-TNF antibody that binds with high affinity to TNF. It is currently licensed for the treatment of RA to reduce signs and symptoms of RA in patients with active disease, to improve the physical function of patients, and to reduce the rate of progression of joint damage. Infliximab is approved for combination therapy with methotrexate in RA in a dose of 3 mg/kg given every eight weeks after the usual initial saturation phase, where infliximab is given at weeks 0, 2, and 6. Furthermore, infliximab is approved for acute and maintenance treatment of Crohn’s disease in a dose of 5 mg/kg. Infliximab is given as an intravenous infusion usually over 1–2 hours.

Etanercept

Etanercept is a recombinant 75 kDa TNF p75 receptor fusion protein that acts competitively to inhibit the cell surface receptor binding of TNF. It is licensed for the treatment of active RA when the response to DMARDs, including methotrexate, has been inadequate. Etanercept is administered by subcutaneous injection at a dose of 25 mg twice weekly or 50 mg once a week.

Adalimumab

Adalimumab is a monoclonal, fully human, anti-TNF antibody that binds with high affinity to TNF. It is approved for the treatment of active RA in the USA. It is given by subcutaneous injection at a dose of 40 mg every two weeks or weekly.

References:

Maksymowych WP, Inman RD, Gladman D, Thomson G, Stone M, Karsh J, et al. Canadian Rheumatology Association Consensus on the use of anti-TNF--directed therapies in the treatment of spondylarthritis. J Rheumatol 2003;30:1356–63.

T Pham, D van der Heijde, A Calin, M A Khan, Sj van der Linden, N Bellamy, and M Dougados. Initiation of biological agents in patients with ankylosing spondylitis: results of a Delphi study by the ASAS Group. Ann Rheum Dis 2003 62: 812-816.

van den Bosch F, Kruithof E, Baeten D, Herssens A, de Keyser F, Mielants H, et al. Randomized double-blind comparison of chimeric monoclonal antibody to tumor necrosis factor (infliximab) versus placebo in active spondylarthropathy. Arthritis Rheum 2002;46:755–65

van der Linden SM, Valkenburg HA, de Jongh BM, Cats A. The risk of developing ankylosing spondylitis in HLA-B27 positive individuals. A comparison of relatives of spondylitis patients with the general population. Arthritis Rheum 1984;27:241–9

van der Linden SM, Valkenburg HA, Cats A. Evaluation of diagnostic criteria for ankylosing spondylitis: a proposal for modification of the New York criteria. Arthritis Rheum 1984;27:361–8

Cardiac complications in AS

The HLA-B27-related spondyloarthopathies are associated with cardiovascular disease in 2% to 10% of cases. Cardiovascular mortality is increased in patients with ankylosing spondylitis. A possible explanation might be a more prevalent atherogenic lipid profile in patients with ankylosing spondylitis than in the general population. It has been postulated that inflammation deteriorates the lipid profile, thereby increasing cardiovascular risk. An increase in disease activity has been associated with decreases in lipid levels. Inflammation and sclerosis of the aortic root and ventricular septum have been linked to the development of isolated aortic regurgitation and conduction abnormalities. It is suggested that clinicians consider the possibility of HLA-B27-associated cardiovascular disease in patients who have aortic and coronary aneurysms.

A recent review of data from patients enrolled an "integrated outcomes database" have shown that "cardiovascular diseases and their risk factors were more common in patients with rheumatoid arthritis, psoriatic arthritis and ankylosing spondylitis," than in those without these diseases.

A small number of people with spondylitis will display signs of chronic inflammation in the base of the heart - around the aortic valve and origin of the aorta (i.e. that vessel which takes all blood from the heart to be distributed throughout the body). Years of chronic and silent inflammation at these sites can eventually lead to heart block and valve leakage, sometimes requiring surgical treatment. Although recognized, these cardiac lesions probably are seen in fewer than two percent of all patients with spondylitis, and nearly always in males. The lesions are readily detectable by the physician's examination and when necessary, cardiac testing.

Also, adults with spondylitis often have chest pain that mimics the heavy chest pain of cardiac angina or pleurisy (the pain with deep breathing that occurs when the outer lining of the lung is inflamed). Anyone experiencing symptoms should seek medical attention to rule out a more serious condition. What often happens, over time, is that the joints between the ribs and spine, and where the ribs meet the breastbone in front of the chest, develop decreased chest expansion because of long-term inflammation and scarring of the tissues. If the pain is found to be spondylitis-related, it is important to practice critical deep breathing exercises to help maintain chest expansion.

References:

Chenglong Han et al. (2006, Sept 15). Cardiovascular Disease and Risk Factors in Patients with Rheumatoid Arthritis, Psoriatic Arthritis, and Ankylosing Spondylitis. J Rheumatol 2006;33:2167-72

Norton, H. (2006, January / February ) The Heart in Spondylitis. Spondylitis Plus

OPSer Calls Herself a “Chronic Volunteer”

OPSer Calls Herself a “Chronic Volunteer”
Topical Stories (Jan 2007)

Jan. 30, 2007 – Cassandra Williams, an Ontario Public Service (OPS) employee, is a chronic volunteer.

Williams admitted her addiction to volunteering when she spoke at the OPS Spirit campaign launch event recently held in Toronto.

Currently a program and policy analyst with the Ministry of Health and Long-Term Care’s Primary Health Care Transition Fund Unit, she was bitten with the volunteer bug when she was a young girl growing up in Trinidad.

Her birth country’s successful campaign to steer young people away from drugs, guns and crime inspired her to contribute her own efforts at making a difference in the lives of young people.

A slogan used in Trinidad to combat youth violence – “ The future of youth is in their schoolbags” – has always influenced her interaction with young people.

As a volunteer with youth, her mission is to encourage them to remain connected to their goals and to teach them the benefits of staying focused on school and strategies to cope with difficult times.

With a pediatric nursing background, she loves being with young people and has the ability to quickly develop a rapport with them.

Williams has worked on health promotion activities as far north as Webequie, Ontario where she helped a First Nations community implement youth suicide prevention initiatives. She has also traveled to the exotic wilds of Tanzania, Africa to work with children of the Masai tribe who are afflicted with disease and famine.

In Toronto, Williams works with YOUTHLINK and organization that supports vulnerable youth in making positive choices and meeting its commitment to at-risk and homeless youth. She also serves as Director on YOUTHLINK’s Board.

“Volunteering with youth is intense and emotionally challenging but it is also very satisfying for me. Helping young people discover the goodness within themselves and the beauty of life is the best feeling in the world,” said Williams.

She has also raised thousands of dollars for The Arthritis Society and donates her time as a foster parent with the Toronto Humane Society.

Value of Volunteering

The Ontario Public Service’ Spirit 2007 Campaign was kicked off Tuesday with the help of a moving speech delivered by a self-described “chronic volunteer”.

“I was raised in an environment where the village raises the child. I truly appreciate the work of volunteers,” Cassandra Williams, a program/policy analyst with the Ministry of Health and Long-Term Care, told a gathering of about 100 people in the St. Lawrence Lounge of the MacDonald Block.

Williams, who was raised in Trinidad, said the mentors of her youth, who helped her navigate a safe path to adulthood, inspired her to embrace volunteerism as she grew up. “I have volunteered medical services in Tanzania for three months living with the Massai, in Trinidad for three months caring for end-stage palliative patients and for 3 months in a Northern Aboriginal community of 611 people, where youth suicide had become a serious issue."
“I am a foster parent for the sickest animals at the Toronto Humane Society, and I am involved as a board member with YOUTHLINK, a United-Way funded agency, which supports vulnerable youth in making positive life choices,” Williams said.

Cassandra Williams, a self-professed chronic volunteer, helped launch the OPS Spirit 2007 Campaign.

Williams, who was among a group of OPS employees recognized in December with a Volunteer Recognition Certificate for their tremendous volunteer efforts, urged her colleagues to look in their own communities for the umpteen ways they can volunteer and make a difference.

Marc Lalonde of the MOHLTC, who was announced as 2007 Chair of the Spirit Corporate Team, said Williams and many more like her throughout the OPS represent a powerful force for change for the betterment of communities across Ontario. Each year the Spirit Corporate Team, made up of ministry Spirit Leads, chooses a signature campaign to promote throughout the OPS. This year’s campaign of Developing Our Youth—Building Our Future is an especially compelling theme Lalonde said. “Helping youth, truly is about building the future,” Lalonde said. “The kids in the world today, in the province, in the GTA, they need help, they need mentors, they need guidance.”

A number of community organizations serving youth, set up displays and passed along information during the launch, including the Boys and Girls Club of East Scarborough, Big Brothers, Big Sisters, Future Possibilities, Tropicana Community Services, Voices for Children, Youth Assisting Youth, Kids Grow Ontario, 7th Generation Project, YOUTHLINK and the Toronto Public Library.

Although youth is the focus of this year’s campaign, Lalonde said he would encourage OPS members to get out in their communities and volunteer for any organization of their choosing. “We’re about promoting volunteering period,” Lalonde said. “There are so many reasons to volunteer.” Lalonde said he was excited and looking forward to an exciting and eventful year as campaign chair.

A number of other speakers also shared their thoughts with the crowd on youth issues as well as volunteering, including Michelle DiEmanuele, Deputy Minister of the Ministry of Government Services and Associate Secretary of the Cabinet, Trinela Cane, Assistant Deputy Minister of the Business Planning and Corporate Services Division in the Ministries of Children and Youth Services and Community Services and Angela Coke Assistant Deputy Minister, Modernization Division, Ministry of Government Services. Dr. Avis Glaze, Ontario’s Chief Student Achievement Officer and CEO of the Literacy and Numeracy Secretariat was the guest speaker of the well attended event, which ran from 10 a.m. to 2 p.m.

Photo credit: Allen Paul

After my presentation, I was approached by a journalist for TOPICAL--a government newszine that promotes accomplishments/best practices/examples of change in the Ontario Public Service (OPS)--who was interested in writing an article about me, my work with youth, and my inspiration for volunteering. The article should be posted the week of January 29th.

I was also approached by a Coordinator for the Deputy Minister of Community Safety and Correctional Services. She invited me to present at a conference in May, which I graciously accepted.

I was also personally invited to join TOPS, a forum of new professionals in the OPS that have been identified as a key partner in the internal delivery of the Youth and New Professional Strategy as well as a conduit for identifying and implementing suitable learning and development opportunities. TOPS is an organization that was created by young professionals from across the OPS, with the aim of providing networking, mentoring and learning opportunities, and to harness the energy and ideas of a dynamic OPS workforce.

Iritis again

For the last two weeks I felt a burning sensation in both eyes (worse in the left eye) upon awakening. I would mention this to one of my colleagues over morning tea. I also experienced mild light sensitivity. Today it became worse while I was at work and I grappled with the idea of remaining at work until dusk (because of the photophobia) or leaving for home before my symptoms worsened. I decided the smartest thing to do would be to head home.

On my way home the symptoms worsened significantly within ten minutes of being exposed to the bright sunshine. Both eyes began to weep and I had to drive while squinting because the light was painful. I could not keep my left eye open for long, and eventually I was driving with my head tipped back against my headrest to afford me some view of the road through my 3/4 closed right eye. I acknowledge that this was dangerous to do. I thought of pulling over to the side of the road, but I had no cell phone and would not have been able to arrange a lift. I ensured that I took every safety precaution: driving within the speed limit in the slow lane, not changing lanes, and frequently checking all mirrors.

I am really frustrated that this is now my third episode of iritis that I have experienced: Sept 9th, 2006, October 7th, and now Jan 10th, 2007.

Upon reaching home, I instilled Voltaran eye drops that had been prescribed. I then slept for five hours and reinstilled them upon awakening. So it's back to two drops three times per day. I would be interested in hearing about others' experiences with this AS complication; please email/comment your experiences to gymjunkie247@rogers.com

More Books on AS

Ankylosing Spondylitis: The Facts
Muhammad Khan, Professor of Medicine, Case Western UniversityOxford University Press, 206 pagesPublication date: August 2002

Ankylosing Spondilitis: The Facts provides clear and accessible information on treatment, diagnosis, genetic counselling, and daily life with the illness. Professor Khan is one of the leading experts in the world on AS, while also having it himself. This combination of scientific knowledge and personal experience of a debilitating disorder results in a unique book which will prove invaluable for readers wishing to know more about their condition, and those that share their lives.

Your Guide To Living With Ankylosing Spondylitis
Spondylitis Association of America, Sherman Oaks, CaliforniaBook (32 pages) 2000

This guide provides information on common symptoms, causes of pain, fatigue, genetics, treatment and management, psychological challenges, exercises and frequently asked questions. Includes a disclaimer that advises consultation with a health professional prior to beginning any activities or exercises.

Ankylosing Spondylitis - A Medical Dictionary, Bibliography, and Annotated Research Guide to Internet

This is a 3-in-1 reference book. It gives a complete medical dictionary covering hundreds of terms and expressions relating to ankylosing spondylitis. It also gives extensive lists of bibliographic citations. Finally, it provides information to users on how to update their knowledge using various Internet resources. The book is designed for physicians, medical students preparing for Board examinations, medical researchers, and patients who want to become familiar with research dedicated to ankylosing spondylitis.If your time is valuable, this book is for you. First, you will not waste time searching the Internet while missing a lot of relevant information. Second, the book also saves you time indexing and defining entries. Finally, you will not waste time and money printing hundreds of web pages.

Car Driving With Ankylosing Spondylitis
The National Anklyosing Spondylitis Society (NASS) East Sussex, Great BritainBooklet 28 pg 1998

This booklet addresses some of the special considerations related to car driving when one has ankylosing spondylitis. There is an emphasis on car driving safety in general, seat belts, neck restraints and air bags. Written by researcher Dr. Jon Erlendsson of Denmark with assistance from the Volvo Car Corporation.

Straight Talk On Spondylitis (Second Edition)
Robert L. SwezeySpondylitis Association of America, California, USA, 1992Book (58 pages) 1992

This guide is the result of information gathered from patients and rheumatology professionals. The nature of spondylitis and what patients can do to help themselves in conjunction with treatment are discussed. The following topics are covered: understanding the disease; spondylitis in women; medications; exercise; posture; sports and recreation; stress reduction and relaxation; sex; sleep; and employment.

Guidebook For Patients: A Positive Response To Ankylosing Spondylitis
National Ankylosing Spondylitis SocietyEast Sussex, UK

This booklet, produced by the National Ankylosing Spondylitis Society of the United Kingdom, provides answers to frequently asked questions and includes useful exercises.

Ontario Spondylitis Association

In October of 1984, physicians in Toronto invited their ankylosing spondylitis (AS) patients to attend a public forum on current research and new developments in the treatment for the various forms of spondylitis. Dr. Hugh Little, Rheumatologist at Sunnybrook Hospital in Toronto and Russ Morrison, Executive Vice President from The Arthritis Society, Ontario Division, were instrumental in organizing this forum to see if there was sufficient interest amongst the patients to form a spondylitis association in Ontario. Similar groups have been successfully formed in Europe and they felt that a similar group was needed in Canada. A small group volunteered to join a steering committee and on May 1, 1985 the Ontario Spondylitis Association was formed at its first general meeting.

Over the last 20 years the OSA has provided support for its members through public forums, educational materials, support groups and quarterly newsletters while raising over $100,000 for AS research. Dedicated volunteers, including medical and physiotherapy advisors, working under the support and auspices of The Arthritis Society, Ontario Division have been instrumental in keeping the Association active for this past 20 years.

To celebrate our 20th Anniversary, the OSA and The Arthritis Society, Ontario Division, planned a series of special forums in Ontario communities (Cambridge, Ottawa, Peterborough and Toronto). Our aim continues to reach out to AS patients and their families to provide an opportunity for education and discussion on living with AS and related diseases. Please visit our What's Happening and Events sections for updates on public forums and events being held by OSA this year.

Membership 1. Jan. 2006: 298 paying members, including 206 AS sufferers

For further information about the OSA, please contact us at mailto:info@spondylitis.caor by calling 1.800.321.1433.

Canadian Arthritis Health and Research Centres

• Arthritis and Autoimmunity Research Centre (AARC) Foundation--2004-2005 Annual Report. The goal of AARC researchers is to achieve significant advances in the understanding and treatment of arthritis and related disorders.
• University Hospital Network has a Rheumatology Outpatient Clinic at Toronto Western Hospital, which also houses the Centre for Prognosis Studies which conducts clinical trials in Lupus and Psoriatic Arthritis.
• Southlake Regional Health Centre in Newmarket, ON hosts The Arthritis Program (TAP)which delivers effective assessment, treatment and education to individuals of all ages who are diagnosed with inflammatory joint diseases (rheumatoid arthritis, systemic lupus erythematosus, and juvenile joint disease) degenerative joint disease, including erosive and nodal osteoarthritis, osteoporosis and fibromyalgia.
• St. Joseph's Hospital in London, ON hosts the Arthritis Institute, which is a collection of 4 centres and the associated inpatient orthopaedic/plastics unit that are focused in the care of musculoskeletal conditions and injuries such as fractures, replants, rheumatoid arthritis and osteoporosis. In collaboration with the Arthritis Society, their Rheumatology Centre provides outreach services to patients, physicians and allied health professionals outside the London/Middlesex area.

Marathon Man: A True Life Rocky/Forrest Gump story

Book Description:
List Price: $17.95

Charles Robbins has something known as Ankylosing Spondylitis (AS), a chronic, painful, deforming, inflammatory rheumatic disease. Despite this disease’s debilitating affects, and a severe case of Acid Reflux, Charles Robbins has not just survived, but thrived. Once told he would never walk again, today Charles has run in and finished 40 marathons.

Now the millions currently suffering from AS, the tens of millions suffering from other autoimmune deficiencies, and a score of those simply seeking inspiration to succeed can read all about Charles’s extremely inspirational and motivational story, Marathon Man: How I Trained Myself to Run After Being Told I’d Never Walk Again! (And Doing it All by Reaching Within).

Below is an excerpt taken from the website of Charles Robbins:

"Having Ankylosing Spondylitis is very tough, it is basically a crippling
disease along with having a hiatal hernia you would never believe I could do any
of this. Even the medical field can’t believe it, they call me a medical
miracle, with the best mental attitude, and self-determination they’ve ever seen
or heard of. They are the ones who nominated me for the National Community Hero
award that I was honored with. I have also been on the cover of several medical
magazines, you will see one here in my packet. I will continue to help others in
anyway I can. By showing people, “anyone can rebuild themselves.” Disabled or
not they can do more than they think they can. I didn’t let anything or anyone
stop me and never will.

Through it all I lived with everyday struggles in an everyday life, but
something just wasn’t right. For over two years I was suffering badly with
something that felt like it was killing me, but not knowing what it was and
going undiagnosed and hiding it as best I could. Then something totally
unexpected happened to me: I was struck and finally diagnosed with a painful,
degenerative rheumatic disease called Ankylosing Spondylitis, or AS. Doctors
told me I would lose the ability to walk between what they were seeing and as
the chronic nature of the illness set in. They recommended that I get used to
the idea of a wheelchair. I didn’t like that idea. I had another one of my own.
Not once did I ever surrender to the possibility that this disease could beat
me.

The medical “worst case scenarios” were not allowed to enter my
consciousness. I set my mind to do battle with the Spondylitis, to fight every
literal step of the way to maintain control over my body. It was, in a very real
sense, “Me against the disease…”It was very painful and very frustrating, sad,
and hard, but I never gave up. The main purpose for me writing my book is the
same reason why I create and do my events and run my marathons: To help others
and to show others that if I can do it, they definitely can do it, too. To show
others that it is within them no matter how hard or even impossible it looks or
they think it is; they can do it and I want to show/inspire/motivate
them."

Fatigue in patients with ankylosing spondylitis

Of all symptoms that I have experienced related to AS, none disheartens me as much as generalized fatigue. When experiencing disease-related fatigue, I have been known to sleep 14 hours continuously, still feeling exhausted upon awakening. It makes activites of daily living, such as getting out of bed, talking on the phone, driving, and attending to work responsibilities extremely difficult. It's easy to be labelled as lazy, unmotivated, or a procrastinator by those who don't know about AS. After all, everyone gets tired; what makes those of us with AS so different? For those of us striken with this disease, we are too keenly aware of the difference: a feeling of complete body heaviness and general malaise, where even keeping our eyes open seems impossible at times. Coupled with pain, difficulty concentrating, and limited mobility, we struggle to maintain a daily routine in world that has difficulty understanding our personal experience.

Pain, stiffness, functional impairment, range of motion and quality of life are the main conventional domains used in studies evaluating ankylosing spondylitis (AS). However, fatigue continues to be one of the primary complaints among patients with inflammatory rheumatic diseases, according to Croatian researchers in a recent study.

Disease activity, functional disability, and worse mental health are proven to contribute to greater fatigue. The relationship between exercise duration and fatigue intensity is moderated by mental health status. For patients with poorer mental health, exercise does not appear to influence fatigue severity. Research consistently encourages patients with AS to integrate regular leisure physical activity into the comprehensive treatment of their arthritis because it appears useful for modulating fatigue (i). Personally, I have found that my symptoms decrease when I am engaged in regular physical activity (i.e. weight lifting, aerobic classes, running). Not all physical activity works for me, though. Mountain biking and spinning appear to aggravate my condition.

One study(ii) originating out of Norway investigated 1) levels of fatigue in patients with ankylosing spondylitis (AS) compared with the general population; 2) the relationships between fatigue and demographic, self-reported, and clinical measures; and 3) the performance of both a generic and a disease-specific measure of fatigue. CONCLUSION: Self-reported measures of disease activity and mental health contributed significantly to explain fatigue, whereas clinical measures of inflammation and joint mobility did not.

Fatigue may be caused by many things related to spondylitis such as loss of sleep because of physical discomfort. But it can also be a by-product of the disease itself. Spondylitis causes inflammation. When inflammation is present, your body must use energy to deal with it. The body releases cytokines during the process of inflammation. Cytokines are small protein released by cells that has a specific effect on the interactions between cells, on communications between cells or on the behavior of cells. The cytokines includes the interleukins, lymphokines and cell signal molecules, such as tumor necrosis factor and the interferons, which trigger inflammation and respond to infections. Cytokines can produce the sensation of fatigue as well as mild to moderate anemia. Anemia may also contribute to a feeling of tiredness. Treating the inflammation caused by ankylosing spondylitis can assist in decreasing fatigue and anemia.

Another study(iii) acknowledged that fatigue was a frequent complaint of patients with AS. Fatigue had a strong relation with the other symptoms of AS (i.e. stiffness and pain). It was negatively influenced by sleep disorders. Quality of life of study patients was considerably reduced. Anti-TNF therapy (i.e. Enbrel) seemed to ameliorate fatigue more than nonsteroidal anti-inflammatory drug therapy. Regular physical activity was recommended to help alleviate the fatigue. DISCUSSION: No valid, relevant composite tool of multidimensional and multifactorial characters exists to assess fatigue in AS. Treatment such as anti-TNF therapy may facilitate rehabilitation. Regular physical activity helps alleviate fatigue and improves quality of life.

A Turkish study (iv) which evaluated fatigue by using the multidimensional assessment of fatigue (MAF) index in 68 AS patients, suggested that fatigue was a significant symptom in AS and it seemed to occur in severe AS patients. The study recommended that fatigue should appropriately be measured with respect to its intensity with appropriate measures, such as MAF. Moreover, fatigue may increase functional disability, which is already present as a feature of the disease.

References:
i)Da Costa, D., Dritsa, M., Ring, A., and Fitzcharles, M.A. (2004, Dec 15). Mental health status and leisure-time physical activity contribute to fatigue intensity in patients with spondylarthropathy. Arthritis Rheum.;51(6):1004-8.

ii) Dagfinrud, H., Vollestad, N.K., Loge, J.H., Kvien, T.K., and Mengshoel, A.M. (2005, Feb 15). Fatigue in patients with ankylosing spondylitis: A comparison with the general population and associations with clinical and self-reported measures. Arthritis Rheum.;53(1):5-11.

(iii) Missaoui, B., and Revel, M. (2006, Apr 19). Fatigue in ankylosing spondylitis. Ann Readapt Med Phys.;49(6):305-8, 389-91.

(iv) Turan, Y., Duruoz, M.T., Bal, S., Guvenc, A., Cerrahoglu, L., and Gurgan, A. (2007, Jan 25). Assessment of fatigue in patients with ankylosing spondylitis. Rheumatol Int.; Department of Physical Medicine and Rehabilitation, Ataturk Research and Education Hospital, Izmir, Turkey.

Dernis-Labous, E., Messow, M., and Dougados, M. (2003, Dec). Assessment of fatigue in the management of patients with ankylosing spondylitis. Rheumatology (Oxford). 42(12):1523-8.

Frane Grubišic and Zrinka Jajic. (2006, Nov). Fatigue in Patients With Rheumatoid Arthritis and Ankylosing Spondylitis: Its Relationship to Disease Activity and Functional Ability. University Hospital Sestre Milosrdnice, Zagreb, Croatia. Presented at the American College of Rheumatology Annual Meeting.

Iritis

ANATOMY

Uveitis is inflammation inside the eye, specifically affecting one or more of the three parts of the eye that make up the uvea: the iris (the colored part of the eye), the ciliary body (behind the iris, responsible for manufacturing the fluid inside the eye) and the choroid (the vascular lining tissue underneath the retina). The structures of the uvea, marked here in red, are collectively known as the uveal tract.

SYMPTOMS
The symptoms of iritis include light sensitivity, red eye, blurred vision, tearing, pain, and sometimes floaters. The pupil may appear small in the affected eye when compared to the normal pupil. Frequently iritis is a recurrent problem; after a few episodes patients become very astute at early diagnosis. Iritis is sometimes confused with conjunctivitis (as was my initial diagnosis in Sept, 2006), a much less serious disorder of the clear outer lining of the eye.

DIAGNOSIS
When the iris is inflamed, white blood cells (leukocytes) are shed into the anterior chamber of the eye where they can be observed on slit lamp examination floating in the convection currents of the aqueous humor. These cells can be counted and form the basis for rating the degree of inflammation.

TREATMENT
The secrets to the successful treatment of iritis is early detection and proper choice of medicines. Therapy consists of anti-inflammatory and dilating drops. These medicines decrease the inflammation and reduce the scarring that can occur. Both steroids and antibiotics may be used. Persistent cases may require more intensive treatment. Successful treatment of iritis depends on careful and consistent compliance by the patient. The application of hot packs may also provide relief from the symptoms of iritis. In severe cases, oral medications and injections may be necessary to treat the condition.

COMPLICATIONS
Uveitis is a serious ocular condition. It is the third leading cause of blindness worldwide, accounting in the United States for 10-15% of all blindness. Untreated or under-treated uveitis, or repeated episodes of inflammation within the eye, can lead to scarring and blinding consequences. Uveitis is a treatable condition.

Ankylosing spondylitis affects the eyes in up to 40 percent of cases, leading to episodes of eye inflammation called acute iritis. Iritis--a form of Anterior Uveitis--is a term for an inflammatory disorder of the iris. In the majority of cases there is no specific cause. Occasionally, iritis is just one symptom of a disease that affects other organ systems. These are called connective tissue diseases and include: rheumatoid arthritis, sarcoid , lupus , scleroderma , Behcet's disease , anklylosing spondylitis, Reiter's disease, Crohn's disease, ulcerative colitis, and B-27 disease. Sometimes, it is necessary to establish whether iritis/uveitis is a manifestation of one of these or some other underlying systemic disease.

In serious cases, complications may arise. Cataracts, glaucoma, and corneal changes are possible consequences of both the disease and the medicines used to treat it. Uveitis is the third leading cause of blindness in the United States. The prevalence of blindness secondary to uveitis has not changed in the past forty years. Careful observation is needed in the resolving phase to monitor potential problems. If the medicines are withdrawn too rapidly, a recurrence is very possible. Rarely, ankylosing spondylitis can also have serious complications involving the heart and lungs. A longitudinal study of disease activity and functional status in a hospital cohort of patients with ankylosing spondylitis (2004) indicates that iritis and late onset disease may be severity markers for functional impairment.

References:
Rheumatology (Oxford). 2004 Dec;43(12):1565-8. Epub 2004 Sep 7

Cost-Effectiveness of Interventions for AS

Although the direct costs associated with ankylosing spondylitis are relatively low, its impact on indirect costs, including pain and suffering, are substantial. To date, little work has been done on the economics of interventions for ankylosing spondylitis. Pharmaceutical interventions are currently typically limited to NSAIDs and DMARDs such as methotrexate and sulfasalazine.
Van Tubergen and others (2002), however, analyze the cost-effectiveness of a spa exercise intervention. The intervention period was three weeks, and although the authors argue that the cost-effectiveness of the intervention was favorable, they also note that the ICERs were sensitive to variations in assumptions about indirect costs.
Although a spa exercise program is apparently beneficial and may even be considered cost-effective for ankylosing spondylitis sufferers in developed countries, the current cost-effectiveness evidence does not provide a compelling case for widespread adoption of the intervention in developing regions. Patients, however, should be encouraged to exercise, especially to swim. The cost-effectiveness of tumor necrosis factor inhibiting drugs is not yet evident for ankylosing spondylitis, but the drugs are currently unattractive investments for developing countries because of their high price.

References:

A. van Tubergen, A. Boonen, R. Landewe, M. Rutten-van Molken, D. van der Heijde, A. Hidding, and S. van der Linden. 2002. Cost Effectiveness of Combined Spa-Exercise Therapy in Ankylosing Spondylitis: A Randomized Controlled Trial Arthritis and Rheumatism 47: 5 459-67.

Indomethacin

My application for individual benefits with Blue Cross was declined because of my AS diagnosis. This results in my inability to afford Enbrel, which I anticipate needing soon because of the frequency of my flares. I have been using Indomethacin as a substitute; it is readily prescribed by family physicians and is effective at reducing the inflammation that causes moderate to severe pain. Here is some information on this medication for those interested in considering this drug:

Indomethacin is in a class of medications called NSAIDs. It works by stopping the body's production of a substance that causes pain, fever, and inflammation. Indomethacin comes as a capsule, an extended-release (long-acting) capsule, and a suspension to take by mouth and as a suppository to be used rectally. Indomethacin capsules, liquid, and suppositories usually are taken two to four times a day.

Indomethacin may cause side effects. Tell your doctor if any of these symptoms are severe or do not go away:

• headache
• dizziness
• vomiting
• diarrhea
• constipation
• irritation of the rectum
• constant feeling of the need to empty the bowel
• ringing in the ears

Some side effects can be serious.

People who take nonsteroidal anti-inflammatory medications (NSAIDs) (other than aspirin) such as indomethacin may have a higher risk of having a heart attack or a stroke than people who do not take these medications. These events may happen without warning and may cause death. This risk may be higher for people who take NSAIDs for a long time.

I personally have not experienced any of the above side effects, except for ringing in the ears, which has been uncommon.

Safety Considerations regarding Humira

Ankylosing Spondylitis: HUMIRA is indicated for the treatment of adults with severe, active ankylosing spondylitis, who have had inadequate response to conventional therapy.

To date, HUMIRA has been approved in 65 countries and prescribed to more than 150,000 patients worldwide. Clinical trials are currently underway evaluating the potential of HUMIRA in other autoimmune diseases.

Common adverse events (occurring in 1-10%) at least possibly related to HUMIRA include lower respiratory infections (including pneumonia, bronchitis), urinary tract infection, herpetic viral infection (including simplex and zoster), influenza, superficial fungal infections (including skin, nail and foot), lymphopenia, anemia, headache, dizziness, paraesthesias, hypertension, cough, nasopharyngeal pain, nasal congestion, nausea, abdominal pain, diarrhea, dyspepsia, mouth ulceration, rash erythematous, rash pruritic, hair loss, arthritis, fatigue (including asthenia and malaise), influenza like illness, hepatic enzymes increased (including alanine aminotransferase and aspartate aminotransferase), rash and pruritis.

Upper respiratory infection and injection site reaction (including pain, swelling, redness or pruritis) were reported by more than 10% of patients.

Patients must be monitored closely for infections, including tuberculosis (TB), before, during and after treatment with HUMIRA. Treatment should not be initiated in patients with active infections until infections are controlled. Patients who develop new infections while using HUMIRA should be monitored closely. HUMIRA should not be used by patients with active TB or other severe infections such as sepsis and opportunistic infections. HUMIRA should be discontinued if a patient develops a new serious infection until their infection is controlled.

Physicians should exercise caution when considering use of HUMIRA in patients with a history of recurring infection or with underlying conditions that may predispose patients to infections. TNF antagonists, including HUMIRA, have been associated in rare cases with exacerbation of clinical symptoms and/or radiographic evidence of demyelinating disease.

Prescribers should exercise caution in considering the use of HUMIRA in patients with pre-existing or recent-onset central nervous system demyelinating disorders.

Physicians should exercise caution when using HUMIRA in patients who have heart failure and monitor them carefully. In clinical studies with another TNF antagonist, a higher rate of serious congestive heart failure (CHF) related adverse events including worsening CHF and new onset CHF have been reported. Cases of worsening CHF have also been reported in patients receiving HUMIRA.

My Race Schedule for 2007

I am registered for the following races this year. Come on out and cheer me on!

Race #1: Around the Bay
Date: March 25, 2007
Location: Copps Coliseum (Hamilton, Ontario)
Time: 9:30 am
Distance: 30K
Race Start: York Blvd. - one block west of Copps Coliseum
Race Finish: INSIDE COPPS COLISEUM - Bay and York Sts. Hamilton
Purpose: Training run for marathon

Race #2: Harry's Spring Run-Off
Date: April 2007
Location: High Park (Toronto, Ontario)
Time: 10 am
Distance: 8K
Purpose: Speed

Race #3: Sporting Life
Date: May 2007
Location: (Toronto, Ontario)
Distance: 10K
Purpose: Set a PB

Race #4: Wineglass Marathon
Date: September 30, 2007
Location: (Corning, New York)
Time: 9 am
Distance: 42.2K
Route: New York State Wine Country
Purpose: Set a PB

Race #5: Toronto Marathon
Date: October 14, 2007
Location: Downtown (Toronto, Ontario)
Time: 8:30 am
Distance: 21.1K
Race Start: Mel Lastman Square
Race End: Queens Park
Purpose: Set a PB

Long Overdue

This post is overdue. How can I sum up the last few months of training: Intense! Worth it!

I achieved a PB at the 2006 Scotia Half Marathon with my personal coach supporting me by my side every step of the way. I also completed my second trail race--the Vulture Bait--which was also my first 10K trail race. I was very pleased to know that I completed that race in the same time it would have taken me on the road. I emerged dirty and grinning from ear to ear.

The Honolulu Marathon was unbelievable! I awoke at 2am, performed my pre-race ritual, and took the bus to my awaited destination for the 5am start. The race started off with fabulous fireworks. I was inspired to be part of a group in which I ran beside many children under the age of 14, a double-amputee with crutches, two blind participants, and wheelchair athletes. The heat--over 29 degrees Celcius--took its toll on many athletes, particularly returning across Diamond Head. Luckily, 3 days prior to my arrival in Oahu, I spent 10 days in Trinidad; their humidity and heat acclimitized me nicely and I never felt the rising temperature of the dawn. Many racers were seen sprawled on bags of ice at the water stations. The volunteers and cheer teams were superb, and I envisioned every spectator was cheering for me. I almost broke down and cried on several occasions when I saw the AIDS Cheer Team holding signs that read: You are a Hero.

It took me two days of hobbling around Honolulu before I started to feel more limber. Now I am looking forward towards my next marathon and the training races in between. I have already signed up for Around the Bay 30K (March), Harry's Spring Run-off 8K (April), Sporting Life 10K (May), Wineglass Marathon (September), and Toronto Half Marathon (October). Future long-term plans will be to run the Glitnir Reykjavík Marathon in Iceland (August) and the Goofy Run at Disney (January) in 2008.