Recent News

Golimumab (a new anti-TNF) was studied in a multi-centre, randomized, placebo-controlled study. People were randomly assigned 50 or 100 mg of golimumab or placebo every 4 weeks. Sleep disturbance was assessed at baseline, week 14 and week 24. Patients who received golimumab anti-TNF showed significantly great improvement in total back pain, night back pain and quality of life. The conclusion was that patients with active AS showed significant sleep disturbance due to underlying pain. However, treatment with subcutaneous golimumab every 4 weeks significantly reduced sleep disturbance and improved health related quality of life.

Deodhar A, Braun et al. Golimumab reduces sleep disturbance in patients with active ankylosing spondylitis: results from a randomized, placebo-controlled trial.  Arthritis Care Res 2010 [Epub ahead of print]

A register of 842 people with AS using anti-TNF in Demark was used to examine: (1) disease activity, (2) clinical response to anti-TNF, (3) duration of treatment with anti-TNF and (4) the type of people who stay on long term use of anti-TNF treatment.

Findings: Within six months most patients (6 in 10) achieved a clinical response or had a marked reduction in the activity of their disease (pain, stiffness, tenderness etc). 7 in 10 people remained on anti-TNF for at least 1 year, and 6 in 10 for at least 2 years, but by 4 years only half of the people were still using anti-TNF. The people who were more likely to stay on anti-TNF were men, those with high levels of inflammation and those with lower levels of fatigue. In addition, people who had high levels of inflammation, good function and who were a younger age responded better to anti-TNF (i.e had the most improvement) compared to older people with poor function and less active inflammation (but perhaps more existing damage).

Conclusion: Anti-TNF gives a rapid and sustained benefit in terms of reducing disease activity. People who benefit most and who stay on anti-TNF were; the younger men with active inflammatory disease, low levels of fatigue and good function. Therefore, those people likely to come off anti-TNF are older, female with high levels of fatigue and less active inflammation.

Reference: Glintborg B, Ostergaard M, et al..Predictors of treatment response and drug continuation in 842 patients with ankylosing spondylitis treated with anti-tumour necrosis factor: results from 8 years’ surveillance in the Danish nationwide DANBIO registry. Ann Rheum Dis. 2010 May 28. [Epub ahead of print]

12 people with AS, 8 women and 4 men aged 30 – 59 who had lived with AS for between 6 months to 36 years participated in interviews. They were asked to describe their daily life during good and bad days of AS, and to give examples of every situation where they experienced fatigue and of what they did to recover. 7 respondents were in full time and 2 in part time employment and 3 were disability pensioners.

There were 2 types of fatigue identified: 1. Manageable tiredness fatigue, which indicates to the respondent to rest or slow down and 2. illness related fatigue which was accompanied by unbearable pain, severe stiffness and heaviness to the body, which was considered a sign of the onset of a flare up.

With comprehensible, manageable life-strain-related fatigue some respondents felt AS makes life harder. This meant that daily life had become more of a struggle because they always had to take AS into account. In addition to constantly having to take their illness into account they felt that they were expected to find the time and energy to follow advice on treatment and exercise. Some of them felt guilty because they did not manage this. People who felt guilty were usually in employment and had no energy to spare for exercise. Others said that they had disciplined themselves and that they exercised regularly and kept fit. These individuals had often played sport before their illness and for them to exercise was enjoyable leisure activity that gave them new energy. Life-strain-related tiredness is a sign of overload. All respondents said they had to manage their energy and slow down so as to prevent overstrain. They used tiredness as a signal that their “batteries were running down” and that they had to “recharge them” or “take time out” to regain their strength. Thus tiredness protected them from over-exertion.

Illness related fatigue was unfamiliar and unmanageable illness-related fatigue. This give respondents feelings of exhaustion and helplessness. They had become more or less accustomed to the fact that preventing and alleviating stiffness required a good deal of effort and that their sleep patterns had changed. The pain was experienced locally or even throughout the whole body. Illness-related fatigue is a sign of sickness. This form of fatigue was associated with the onset or the flare-up of inflammation.

The two different categories of fatigue may call for different therapeutic approaches. Life-strain-related tiredness has a positive aspect in that it can protect against overstrain and can be relieved by self-management strategies and regulated by modifying everyday life strain. Moreover it is likely that more life strain can be endured if physical fitness is improved. In contrast, illness-related fatigue seems not to serve any purpose in guiding everyday life regulation. The present findings suggest that illness-related fatigue needs a medical therapeutic approach aimed to modify disease processes.

(Study from Austria)

Fifty-six people with AS and 48 people who did not have AS were asked to complete a questionnaire about their body and their image of their body. The people with AS were also asked about pain and their ability to do everyday tasks (function).

The people with AS (especially the women) had more worries about physically not looking right (physical ‘deficits’) and the people with milder AS had more insecurity about their physical ‘deficits’ compared to the more severely affected people. The people with AS considered themselves less attractive than those without AS.

However, people with AS reported better physical vitality than those without AS. This might be because they were carrying out regular physical activity and doing more exercise. There were no differences between the those with AS and those without in terms of sexual problems.

People with AS had normal well-being scores, so general well-being was the same for those without AS.

CONCLUSIONS: Medical practitioners should consider  problems in body image for people with AS and where a problem is identified, psychological and physical  therapy should be offered.

Reference: Clin Exp Rheumatol. 2010 May 11. Body image in patients with ankylosing spondylitis. Guenther V, Locher E, Falkenbach A, Gutweniger S, Kopp M, Pfaffenberger N, Stuerz K, Mur E. Centre of Psychiatry and Psychotherapy, Department of General and Social Psychiatry, Clinical Psychology, Innsbruck Medical University, Innsbruck, Austria.

There are a large number of people in Iceland who carry the B27 gene (15 people in every 100 in Iceland), this study examines how many people have a diagnosis of AS.

A nationwide search was performed by screening hospital records and private rheumatology services for cases of AS. Individuals diagnosed with AS were asked to participate in the study by answering a standardised questionnaire and to undergo an interview and clinical evaluation.

A total of 256 individuals were identified with  AS (169 male, 87 female); 8 in 10 (84%) of these individuals had the HLA-B27 gene.  This means 1 in every 1000 people in Iceland has a diagnosis of AS (this figure will not include people who have not been given a diagnosis yet).

The average age when symptoms began was at age 24 and the average age of diagnosis was 32 for men and 34 for women (9 years of delay in diagnosis)

Women with AS were more likely to also have arthritis in their non-spinal joints (hands, feet, knees, shoulder). Men were more likely to also have iritis (inflammation of the eye).  Prostatitis was experienced by 27% (almost 3 in every 10) men with AS. Prostatitis is an inflammation of the prostate gland .

Although the B27 gene is very common in Iceland, AS is less common in the Icelandic population than reported in other places in Europe.

Reference: Geirsson AJ, Eyjolfsdottir H, Bjornsdottir G, Kristjansson K, Gudbjornsson B.Clin Exp Rheumatol. 2010 Mar 31. [Epub ahead of print] Prevalence and clinical characteristics of ankylosing spondylitis in Iceland – a nationwide studyDepartment of Rheumatology, The National Hospital of Iceland, Reykjavik, Iceland.

NASS has launched “Looking Ahead” an outline of the best practice for the care of people with AS. This was launched on the 21st April.  There are 7 recommendations given in this report:

1. Back assessment pathways should include a system for the recognition of inflammatory back pain.

2. People with suspected AS should be referred to a rheumatologist.

3. The diagnosis of early AS should be made without waiting for X-ray changes: MRI is the investigation of choice.

4. People with AS should have access to all appropriate specialists and treatments.

5. People with AS should be made aware of the availability of anti-TNF therapy and offered treatment if eligible.

6. People with severe spinal deformity should have access to expert surgical assessment and treatment.

7. People with AS should be followed up regularly and have ready access to expert reassessment.

The full electronic version of the document will be attached here when available.

On the 17^th of March a Research Strategy Meeting was hosted by Arthritis Research UK, bringing together clinicians, researchers and NASS to discuss what the future direction for AS research should be. Some of the conclusions were that work should be done to examine:

1. Why there is a delay in diagnosis and how we can reduce the delay?
2. Predict long term severity of AS so that anti-TNF can be offered to prevent a severe disease.
3. Examine and define flares of AS
4. Examine the effects of anti-inflammatory drugs on the results of MRI scans of the sacro-iliac joints – do they mask inflammation and make scans appear "normal"?
5. Can anti-TNF be stopped or reduced in a person doing well on treatment?
6. If a person is not doing well on one anti-TNF should they be switched to another type of anti-TNF?
7. What is the optimal physiotherapy, hydrotherapy and exercise regimen?

LET US KNOW WHAT QUESTIONS YOU THINK SHOULD HAVE BEEN ON THIS LIST?

For more information about this group go to :

http://www.arthritisresearchuk.org/research/clinical_study_groups/csg_-_spondyloarthropathies.aspx

Also, a call for people to run a UK AS register has been made by the British Society of Rheumatology (BSR), so that we can answer some of these questions.

Two hundred and forty three people with AS and 118 people of the same age, sex and educational level who do not have AS took part in the study. People with AS who had high levels of disease activity, poor function and high levels of pain were more likely to also have high levels of depression and anxiety/stress. People had high levels of depression and anxiety had a poorer quality of life. People with AS on the whole did not have higher levels of depression compared to people without AS (of the 243 people with AS, 96 (4 in 10) had a high likelihood of depression compared to 4 in 10 for those without AS). However, they were more likely to have anxiety/stress (2 in 10 with AS had anxiety compared to 1 in 10 of those without AS). Those people with AS who do experienced depression were also the people with higher levels of pain and disease activity (fatigue and stiffness). Chronic pain causes anxiety, insomnia, exhaustion and worry and depression. The conclusion of this study is that dealing with disease activity is important but health care professions should also be aware of depression and anxiety. As well as dealing with the disease specifically, helping people with good mental health is also important when managing AS.

Reference: Ozlem Baysal, Berkir Durmus et al. Relationship between psychological status and disease activity and quality of life in ankylosing spondylitis.  Rheumatol Int Published online 10 March 2010.

Having chronic or constant inflammation can lead to inflammation and damage to the blood vessels in the heart. People with ankylosing spondylitis, psoriatic arthritis and other types of arthritis can have damage to the heart caused by the inflammation of their arthritis. This study looked at the effect of anti -TNF treatment on arterial stiffness (how stiff are the vessels in the heart) in 60 people with rheumatoid arthritis or ankylosing spondylitis or psoriatic arthritis. 35 people took anti-TNF and 25 people did not. The stiffness of the heart (aortic pulse wave velocity) was measured after 3 months in both those who took anti-TNF and those who did not. Anti-TNF was found to improve the condition of the heart (less stiffness in the heart blood vessels). 

These findings mean anti-TNF can help lower the cardiovascular risk, or risk of heart damage for people with anklosing spondylitis and other types of arthritis.

Reference: Study from Norway published in Hypertension 2010 Feb 55(2):333-8. Authors Angel K, Provan S, Gulseth H, Mowinckel P, Kvien T, Atar D. Tumor necrosis factor-alpha antagonists improve aortic stiffness in patients with inflammatory arthropathies: a controlled study.

134 people with AS completed weekly questionnaires about flares of their AS. Participants were asked to complete questionnaires for three months and to record if they were currently in flare and if so, was their flare localized (pain and swelling in one localized area with fatigue and stiffness) or generalized (generalized pain, hot burning joints, muscle spasm, fever, sweating, extreme fatigue and stiffness). Findings showed that in any given week 7 in 10 people reporting to be experiencing a flare, approximately 6 in localized flare and 1 in generalized flare. The people who experience the generalized flare had worse disease activity during their flare-free (no flare) periods compared to those who did not have generalized flares. The generalised flares lasted an average of 2.4 weeks and were preceded by and followed by a localized flare in approximately 9 out of 10 cases.
These findings suggest people with AS have regular flares of disease. However, those people who experience generalized flares appear to have more severe and active disease. These results have implications in terms of helping to identify people with severe disease early on who may benefit from starting anti-TNF therapy.

Reference: Rheumatology (Oxford). 2010 Feb 1. Authors R Cooksey, S Brophy, M Gravenor, C Brooks, C Burrows, S Siebert. Frequency and characteristics of disease flares in ankylosing spondylitis.

Emerging unpublished findings:

Linkage of the records of 83 out of 490 general practices in Wales (17% of practices) identified 1046 people with an ankylosing spondylitis diagnosis. This means there could be 6175 people with a diagnosis of AS in Wales. There are approximately 3 million people in Wales. Thus this suggests that 1 person in every 500 has a diagnosis of AS.