There is no question that rheumatoid arthritis is a debilitating illness, dismissed in society as “arthritis”

I was 70 years old when I was diagnosed with rheumatoid arthritis. For years I had noticed that the middle joint of my index finger was very sore if I wrote for any length of time. I put this down to keeping the finger stiff when holding a pen or pencil.

When I visited my GP, it was with a completely different problem, and I only mentioned my painful joints in passing. To my surprise – and disappointment – a blood test came back that confirmed a high rheumatoid factor.

My disappointment reflected my belief that having kept reasonably fit throughout my life I might avoid an illness that would never get better. I armed myself with as much knowledge as I could, buying numerous academic books and delving into reliable websites.

My initial consultation with a rheumatologist confirmed some of the things I had read about; that rheumatoid arthritis is an autoimmune illness which cannot be cured, only controlled with medication. Put simply, my immune system saw the body it lived in as an enemy (like an infection or a virus) and needed to control and destroy it! I was started on tablet medication which I was told would be lifelong.

Side effects

Except for nausea, I didn’t notice for a while that this medication was having an adverse effect on my system. But slowly, I started to lose weight. When this became noticeable to others, alarm bells started to ring, and I was eventually sent to see a gastroenterologist.

In the minds of the hospital clinicians, they were considering I might have cancer, yet I knew this wasn’t the case. My nausea had not been considered a major problem, but now the weight loss changed that view. The usual tests confirmed there was no cancer, so everyone relaxed and my medication remained unchanged.

But my rheumatoid arthritis was still very active. I had swollen and tender joints, huge fatigue and found walking a struggle. My GP arranged an urgent appointment to the hospital. This appointment did not resolve anything so my GP and I agreed a second opinion might be worthwhile. On a recent holiday, I had met a rheumatologist who had said she would be happy to give me a second opinion. I took up this offer and my GP sent the referral letter.

A new beginning

My new consultant initially ordered a barrage of tests, starting again really. One of the lung tests confirmed I had lung scarring, and I was given the new diagnoses of rheumatoid arthritis interstitial lung disease. Again I reminded myself that this was my immune system attacking my body and had nothing to do with any external agent, ie there was no infection or virus. With a new drug regime, I started to regain weight. Although better in many ways, my joint pain and swelling remained, thus requiring extra visits for joint injections.

A few months later it was decided that I should start on biologics. At this point I needed a further chest X-ray, which to my surprise confirmed latent tuberculosis (TB).

At this point, all my rheumatoid arthritis drugs had to be stopped and I was started on three months of TB medication. It was explained to me that without doing this there was a potential for the biologics to reactivate the TB. I couldn’t help reflecting that there was a point in my past when my immune system had protected me, not like now.

Once the TB treatment was complete, I restarted my tablet rheumatoid arthritis treatment, which now included a biologic drug. For the new treatment it was necessary to go into hospital as a day case. The treatment was given in two doses, two weeks apart, with a repeat as and when necessary. This was initially six to eight months apart. In the days, weeks and months that followed, I continued to improve, and to date I am still on these drugs.

Making a difference

Had there been the knowledge, awareness and facility to measure drug levels when I was first diagnosed, it is quite possible that I would not have continued to suffer so much. My life could have been easier to manage. My memories are of going to a rheumatoid arthritis clinic, full of hope that tomorrow I would feel better, only to find there was no change, and it would be months before I would see anyone again.

That was a time of struggle, despair and hopelessness. My guess is that I speak for many people with rheumatoid arthritis. There is no question that rheumatoid arthritis is a debilitating illness, dismissed in society as “arthritis”.

We need research that helps to alleviate this burden on the individual, and that is why I am so intent in doing all I can while I am still here, to reduce this suffering. If it is our intention to relieve pain, and reduce suffering through research and any other means, then we owe it to patients to seek and explore all possibilities. If a blood test could be developed that can do that, then it is our duty to research that possibility and make it available.

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