An unusual AS story

An unusual AS story

My Dad had axial SpA, so I was aware of the possibility I might develop it. It started when he was in his 30s. He was very stoical, although he had a lot of pain, and many visits to Moorfields Eye Hospital with uveitis – before steroids were widely used. After many years he had a very fixed spine, but was reasonably upright.

I had one severe episode of backache when I was 25, caused by a “slipped disc”. This was treated, remarkably successfully, with a Victorian style corset with 10 metal rods in a strong elasticated tunic ! After 2 months I was OK! No more back problems for many years.

I played a lot of sport in my teens and twenties – rugby, athletics, hockey, swimming and water polo, and was reasonably fit until my sixties. I had a successful hip replacement in my early sixties then two to three years later I started to get a lot of low, sacroiliac joint backache, and some knee pain.

I was 67 when I saw my GP and a rheumatologist about these symptoms. I had a positive HLA B27 genetic marker test and there were early axial SpA type changes in my sacroiliac joints, but my symptoms were thought to be mainly age-related wear and tear, and I was treated with analgesics. I was taking blood-thinners for an irregular pulse, so non-steroidal anti-inflammatory analgesics were contraindicated. The side-effects of codeine and tramadol were so disturbing that I only used paracetamol when necessary! My pain varied a bit from day-to-day, rather than a settling down/flare up pattern.

Over time my sacroiliac pain got worse and MRIs suggested that active axial SpA was at least part of the cause. Initially my rheumatologist recommended ‘watchful waiting’, then I was treated with steroid injections which gave me little benefit. Then I tried methotrexate, with only modest benefit.

Anti TNF therapy was considered but, at the time, biologics hadn’t been used much in older people. There was a concern that I might find the side-effects a problem. I was screened for TB before biologics could be started, and had a positive test for latent TB. This meant the TB bacteria was dormant in my body but there was a chance that it could become active if I started on biologic therapy so I needed to go on antibiotics to clear it up.

Then at the age of 75 I started my first biologic, the anti TNF etanercept. No luck so I moved to adalimumab a few months down the line. I still had symptoms and it was hard to know what was age related and what was related to active inflammation.

At this point I was referred on to another rheumatology department and they suggested trying the anti IL 17A secukinumab. At 77 I finally found a treatment that changed my life! The effect was remarkable and my back pain and enthesitis (when Inflammation occurs at the site where ligaments or tendons attach to the bone) were finally resolved. I will be 84 soon and am delighted to report it’s continued working. During the time being on biologics I have not experienced the immuno-suppressive risk that comes with them, with just a single infective episode of bursitis.

This rheumatology department also offered a remarkable opportunity – a two-week rehabilitation course with a group of other people with axial SpA. My time at the Royal National Hospital for Rheumatic diseases included medical check-ups, including blood tests and scans, talks from specialist nurses, occupational and physio-therapy assessment, daily physiotherapy and hydrotherapy, and psychological support. A real bonus was comparing notes about our experiences, with people of different ages and backgrounds in the group.

The course is still running and I can’t recommend it highly enough.

We still need to remind doctors of the possibility of axial SpA in younger people with back pain and suggestive symptoms, particularly if there is a family history, and a positive genetic test. My story, and the very late onset, and then benefit of specific treatment, are obviously a very rare example of axial SpA, but do suggest that a diagnosis of axial SpA should be considered at any age, if there has been a history of back pain which has come and gone over the years. It’s just so easily missed or put down to other causes.

Symptoms starting slowly

Pain in the lower back

Improves with movement

Night time waking

Early onset (under 40)