The following article was published in the British Medical Journal (BMJ) in December 2010, written by NRAS CEO Ailsa Bosworth and Alan Steuer, Consultant Rheumatologist.
Ailsa Bosworth was about 30 years old when she was diagnosed with seronegative rheumatoid arthritis. She describes her journey with the disease that led her to found a national charity, the National Rheumatoid Arthritis Society
My father had ankylosing spondylitis with active peripheral arthritis and iritis and was severely ill all his life. He died early from a stroke at age 62. Despite this family history, when I started to experience symptoms of a painful, swollen knee, it didn’t occur to me that I might have inflammatory arthritis. My parents’ generation kept their health problems private and didn’t really share their difficulties with their children. So although I was aware my father had something called spondylitis and was taking various drugs, I didn’t really understand what this meant, what caused it, or what the future might hold for him, or me.
Rheumatoid arthritis is painful and disabling. It is not well understood by the general public, who hear the word arthritis and interpret it as osteoarthritis, a quite different disease. This is a source of great irritation to people with rheumatoid arthritis. A major cause of delay in diagnosis is people’s failure to recognise that their symptoms indicate potentially serious and incurable illness. This is probably why it took nine months before my boss forced me to go and see a general practitioner, by which time I could barely walk. The general practitioner referred me immediately to a rheumatologist and rheumatoid arthritis was diagnosed straight away. I found myself in hospital having my knee aspirated and injected with steroid, and my whole leg was put into plaster. As soon as the cast came off and I started walking around again, the knee filled up. I can’t now remember how many times it was aspirated.
I had my daughter in 1982, having taken five years to get pregnant—I didn’t know then that rheumatoid arthritis can affect fertility. I was well during my pregnancy, as is often the case, but the disease flared up badly after Anna was born and went everywhere in my body, attacking particularly my knees, hands, wrists, and elbows. I remember having difficulty in holding and lifting my daughter. By the time she was 9 months old, I was in hospital having my first operation—a right knee synovectomy, which was extremely painful with a long recovery period. I was fortunate to have a nanny to help me as I had gone back to work when Anna was 3 months old, and despite severe disease and 17 operations, I have always worked and wanted to work.
In 1984 I was made a director of the company I was working for and I was determined that rheumatoid arthritis was not going to prevent me achieving my goals.
Treatment then and now
The treatment I received in those early years was very different from the treatment received by people with a new diagnosis these days. All I was given for the first three years, despite severe disease and visible bone erosions in x ray films, were pain killers and non-steroidal anti-inflammatories. The disease modifying drugs, which were considered to be very toxic and were given only when a patient had become extremely ill and disabled are now given immediately on diagnosis. I was hospitalised several times when things got really bad; I had lost weight and was about 48 kg and was beginning to despair. The treatment that I was receiving (or lack of it) was usually causing me to be in tears after my clinic visits. Fortunately a medical friend who could see the trouble I was in did some research and recommended an eminent rheumatologist. I immediately sought referral to him from my general practitioner.
At last, someone who could help
By the time I was sitting in front of my new consultant, I was a week away from a second synovectomy, this time on my left knee, which I was dreading. He took a thorough history, arranged blood tests and radiography and announced that I didn’t need the operation. I was delighted. He prescribed me steroids, which I felt at the time literally saved my life. However, I didn’t realise then that I would be on a low dose of steroids for some 20 years. With hindsight, I would have tried to wean myself off them at a much earlier stage had I known the damage they would do. In fact, if someone had sat me down and told me what I would be facing over the coming years, I would have been horrified and terrified; perhaps it is just as well that we can’t see into the future but must deal with things as they occur.
Disease modifying drugs did not help me
Over the next decade I tried penicillamine, sulfasalazine, hydroxychloroquine, oral and parenteral methotrexate and had gold injections for five years. Nothing worked. I continued to erode, and I had four operations on my hands and wrists to repair ruptured tendons, excise the ulnar styloid on both wrists, and fuse both wrists with Stanley pins. Each operation meant that an arm was out of action for three months, which wreaked havoc with my life: I couldn’t drive, cook, wash or dry my hair myself, get dressed, type normally, and so on. I also had hip replacement surgery, during which I lost so much blood that my haemoglobin levels dropped so low that I had to have a blood transfusion. During a previous spell in hospital for bed rest the doctors had established that I had pernicious anaemia, and so after many iron injections, I was switched to monthly B-12 injections, which I must now have every three months for the rest of my life.
Desperation and hope
In 2000 my consultant managed to get me onto a trial of infliximab, a new anti-TNF (anti-tumour necrosis factor) drug, at Guy’s Hospital in London. I was desperate. Nothing had worked for me and only the steroids were enabling me to function at all. Within an hour and a half of receiving the first infusion, I could feel a positive difference. I wasn’t so stiff and painful. I could see a glimmer of hope that maybe things could be different, and after four months of taking the drug I was getting my life back. At the end of the trial I was devastated to be taken off the drug and told I wouldn’t be able to get it because no one would fund it. I found this incredible, and it took six months of fighting to get myself back on treatment.
The impact on my life
It took me a long time to come to terms with the impact of rheumatoid arthritis on my life. I used to be very active: I danced, rode horses, did snow and water skiing, played tennis, and loved walking, but bit by bit I was having to give up all these things. When I couldn’t wear heels any longer I had to change my whole wardrobe to accommodate shoes I didn’t like. I put off applying for a blue badge because I couldn’t face being referred to as disabled. My arthritis has affected not just me, but my family. Every time I went into hospital for more surgery, my young daughter used to think that I was going to die, and we always had to spend time consoling and reassuring her that I really was going to come home again.
Since 2000 I have had posterior and anterior cervical spine fusion of C4 and C5, both elbows replaced, a left total knee replacement, right hip replacement, triple arthrodesis to my left foot, both ankles replaced, and reconstruction of my left foot and ankle. I have also had iritis, which has left me unable to see out of my right eye. I am due to have a vitrectomy on this eye in the hope that once the debris caused by the inflammation has been removed, a contact lens may enable me to see more clearly. I do hope so as the lack of vision in that eye interferes with the good sight in my other eye, which I pray will remain. The thought of this happening in my good eye is something that I cannot contemplate; it would be devastating.
A clinician’s perspective
I first met Ailsa when I took over her care in 2002. She had a 20 year history of a severe seronegative inflammatory polyarthritis. This had resulted in widespread joint damage and disability. As with many patients with inflammatory arthritis, Ailsa had been treated with many traditional disease modifying drugs, which had largely failed to suppress her arthritis.
Of all the treatments that Ailsa had previously received, the combination of low dose oral methotrexate plus intravenous infliximab (a TNF-α inhibitor) in the context of a clinical trial had been her most effective treatment. Over the next couple of years she was converted to a higher dose of methotrexate plus adalimumab (a self administered subcutaneous TNF-α inhibitor). This improved control of her arthritis, and she was gradually weaned off her long term oral prednisolone. Despite this improvement the legacy of persistent joint inflammation over more than two decades has necessitated further prosthetic joint surgery over recent years. Ailsa’s management has required close clinical interaction between rheumatologist, specialist nurses, specialist orthopaedic surgeons, and her general practitioner. Access to such a multidisciplinary approach for patients with complex inflammatory arthritis is essential, yet the financial constraints in the NHS make this increasingly difficult to maintain.
The prognosis of patients with rheumatoid arthritis and other inflammatory arthropathies has improved considerably over recent years. Earlier diagnosis, more aggressive treatment with disease modifying drugs (often in combination), and increasing access to biological agents have all contributed to this improvement. Nevertheless, clinical “remission” is not the rule, with many patients still developing progressive deformity and disability.
During my initial consultation with Ailsa in 2002 she mentioned to me how she had recently started the National Rheumatoid Arthritis Society from her own home with the help of a few volunteers. The society is now a prominent and important patient organisation with a national profile. It provides both support and a “mouth piece” for patients with rheumatoid arthritis in this country. These days our outpatient consultations and her surgical procedures are fitted in between her commitments to local, national, or international rheumatology meetings or working parties. The consultations generally start with a discussion of what I can do to help Ailsa with the management of her arthritis, invariably followed by an offer from Ailsa about what the National Rheumatoid Arthritis Society can do to help us and our patients.
There are of course many challenges in working with patients with inflammatory arthritis, particularly an “expert patient” who knows the outcome of the clinical trial or the NICE guidance before you do. However, Ailsa is an example of how an individual with the right personal attributes can use adversity as a motivation for supporting both fellow patients and the healthcare professionals who are privileged to care for them.
Alan Steuer, consultant rheumatologist
National Rheumatoid Arthritis Society
This battle, and the feeling that there was no one to help me, led to my starting the National Rheumatoid Arthritis Society (NRAS) in 2001, with great support from some wonderful rheumatologists. The society operated from my home at first, moving in 2004 and then 2013 to its current offices, where we now have 20 staff. The NRAS is providing valuable services for people with rheumatoid arthritis—I like to think of it as a one-stop shop for people living with the disease—and everyone at the NRAS is dedicated to improving the quality of life for people living with this awful disease.
BMJ 2010;341:c7095 http://www.bmj.com/content/341/bmj.c7095