Be part of research – Salah’s blog, a participant perspective

For International Clinical Trials Day, Dr Salaheldin (Salah) Hassan, shares his personal experience of living with arthritis, a debilitating condition caused by the body’s natural defence system mistakenly attacking normal cells. He explains why participating in the TAPER (Tapering of Biologics in Inflammatory Arthritis Patients in Remission) study at Manchester Royal Infirmary is important to him and encourages others to be part of research.

Salah at Manchester United Football Ground

Through research our understanding of certain kinds of disease has changed and developed and so have treatments and outcomes. That is why I am proud to be a part of research, and why I would encourage others to take part, if they can.

I first began to suffer with the symptoms of arthritis, with a constant deep pain, inflammation and stiffness in the joints around 10 years ago.

Living with the condition took a lot of management, and everyday adjustment. Waking up in the morning, I would need an hour to overcome the pain and stiffness, just to get out of bed. I also struggled to drive, sit, or stand for long periods (things that are generally part of everyday life). My knees were particularly affected by the pain and stiffness and at its worst this could reach intense, incapacitating levels, not just for hours, but for weeks, if I had a flare up.

I was only in my 20s when I began various treatments for arthritis. It took a few years before doctors were able to specifically diagnose my condition as seronegative arthritis. This was helpful in identifying a treatment plan to target my form of arthritis. However, at that time, as a doctor on call and working shifts on busy wards, despite the medications I was taking I had constant flares.

At this point I was given biologics called TNF-inhibitors – powerful drugs that may slow or stop inflammation in the joints – and this has been very successful for me.

In fact, I feel having this biologic medication has been life-saving. I have injections every other week and since I started this treatment my life has been transformed. I feel I am now leading a relatively normal life, without previous levels of constant pain or fear of flares.

Salah at work

I am currently working for the NHS, my specialty area is histopathology, which involves the diagnosis and study of diseases of the tissues by examining tissues and/or cells under a microscope. I have always been interested in the pathological base of disease, and this partly combined with my own condition has influenced me to pursue a career in histopathology.

Of course, these biologic treatments have only been made possible through research, but research cannot stop. There can be a higher risk of infection with this treatment and the longer people take this drug, the greater the chance they will develop a tolerance which might stop the drug from working.  So, reducing (tapering) the drug where appropriate could be beneficial in the long term.

The TAPER study, which I am currently part of, is being led by Professor Anne Barton, Honorary Consultant Rheumatologist at The Kellgren Centre within Manchester Royal Infirmary.

The study involves having regular blood tests to check my drug levels and to see whether there are any anti-drug antibodies in my blood which would stop the treatment working.

I met with Professor Barton at the start of the study, which was great as I was able to ask any questions I had about the research. She explained that previous research has shown these drugs can be safely reduced in around half of patients, but currently there isn’t a test to help identify which half, so the study is exploring if these blood tests could help to do so.

If I can reduce the drugs I take without an impact on my health, this would be a life-changing step forward for me personally, but the findings from this research could help others too and may one day lead to official guidelines on the use of such blood tests. This is just the first step.

I feel positive about taking part in the study. Although there is no guarantee that it will help me directly, taking part is easy and it may one day help improve the treatment of others with this condition. Research is the gateway for improvement. That’s why I would encourage everyone to get involved if they can.