In the run-up to Arthritis Care Week, from 8-14 May, Oonagh Diamond from Magherafelt explains how a bout of anaemia led to her being diagnosed with this chronic progressive disease that causes painful deformity and immobility in the joints.
It is nearly seven years since I was diagnosed with rheumatoid arthritis (RA). I’d been to my local blood transfusion unit to give blood and was found to be severely anaemic.
My doctor sent me for tests and I received an iron infusion. I was advised to rest more as I was badly run-down.
Over the next couple of months I became more conscious of being sore all over. Then one of my finger joints became red, hot and swollen, which I later discovered was known as a ‘flare’. That’s when my GP told me she thought I could have RA.
I remember feeling shell-shocked. I thought only old people get arthritis. I probably did what most people do and ‘Googled’ the condition. I tried to learn as much as possible about the symptoms and prognosis.
My consultant rheumatologist explained the best way to treat aggressive RA is to find the right combination of medicines to bring the inflammation in my joints under control and lessen the possibility of further joint damage.
At this point I was introduced to disease-modifying anti-rheumatic drugs (DMARDs) and over the next couple of years I tried various DMARDs and steroids. However, due to several side effects it was becoming more difficult to manage my pain.
My doctor then told me about a specific group of drugs known as biologics. These are genetically-engineered proteins derived from human genes that are offered to some patients who haven’t responded to DMARDs.
They’re designed to inhibit specific parts of the immune system that play pivotal roles in fuelling inflammation, which is a central feature of RA.
I found out, however, that due to costs to the health service the waiting list was approximately nine to 12 months. Learning there were drugs that could make a massive impact on my condition was extremely positive, but knowing I’d have to wait so long was difficult.
I’ve now been on a number of biologics for the past four years and, whilst I’ve had varying degrees of success, the side effects have meant I am still part of the ‘trial and error’ system.
I believe I’ve been very fortunate. I’ve learnt how to manage my condition – for me this means I know what I can or can’t do and, if I overdo something, what impact that will have on my body.
I’ve had to have two different operations on both wrists. My left wrist is now fused (wrist arthrodesis) and my right wrist has had an artificial part known as prosthesis inserted in it (wrist arthroplasty).
Both operations carried a lengthy recovery time and, unfortunately, I had to give up my work. However, I have recovered well and hope to return to employment soon.
I meet my GP regularly and I’ve always felt she really listened to my queries. Similarly, both my consultant rheumatologist and my surgeon have always been very approachable.
I’m naturally a good communicator and I’ve learnt it’s so important to ask questions and challenge answers that I haven’t always understood.
Are you facing a lengthy wait for medication that would help your condition?
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