I was diagnosed with WG in April 2009, aged 43. I had been fit and active, competing in cycling time trials and triathlon events. However I was having random joint pain that would last for a few days and then move to a different part of my body. GP’s tests were inconclusive and I was diagnosed with gout. I modified my diet but began to experience other issues. There were skin lesions on my torso and legs – diagnosis “impetigo”.
I was training for the Great North Run but I felt really tired, I had no strength in my hands, and my wrists were hurting. I put it down to old age creeping on, did the half marathon and finished in a decent time.
As the winter passed the aches and pains appeared in different parts of my body. I was tested for diabetes and prostate cancer, thankfully I had neither. In February I was aware of my diminishing health and the 50-70 mile training rides I would normally complete were leaving me wrecked. More tests – the results were puzzling and nothing was showing up. Why did I feel so dreadful inside when there was nothing showing on the outside or on the tests?
My colleagues noticed I was finding work increasingly difficult and following nagging from my wife, Ann, I went back to the doctors. This time an appointment was made with the rheumatologist for possible migrating poly arthritis. Without a diagnosis all that could be prescribed was ibuprofen and paracetamol.
By late March work was becoming more difficult, I was very lethargic, suffering from pain in my joints, increasingly short of breath and having difficulty walking. One evening Ann took me to A&E at the Queen Elizabeth Hospital. I explain my symptoms but my joints were moving freely as I was lying down. There was no swelling and my muscles responded to resistance tests. As a cyclist I was used to working through the pain barrier and have a high threshold. My vital signs appeared to be normal with a healthy resting pulse of 88; however, this was double my normal rate, something they didn’t appreciate.
After several hours still nothing to find. “Keep taking the ibuprofen and keep the rheumatology appointment”. I was disheartened and felt like a fraud – but why was I feeling so dreadful when they couldn’t find anything wrong?
It was too difficult to go to work. I was fatigued and in pain – the bottoms of my feet felt like they were being hit with a hammer when I tried to walk. When I was sleeping my breathing was twice the normal rate. Ann was becoming increasingly worried. By 6th April I was running a temperature, exhausted and had a small nodule on both elbows and had multiple joint pains. Another visit to the QE where one of the consultant rheumatologists assessed me.
Much discussion with colleagues and “rheumatic fever” was diagnosed. At last a diagnosis, what a relief.
That was short lived however and over the next few weeks I deteriorated further. Every day I kidded myself I was getting better. I became weaker, could hardly walk and the pain now involved all my joints, and my muscles were aching. My symptoms were now – red eyes, double vision, high temperature, multiple joint pains, coughing up blood, elbow nodules, malaise, breathlessness, anaemia, high pulse rate, a fast breathing rate, and then passing blood. Back to the QE.
Luckily, after three days in MAU (Medical assessment Unit) I was sent to the Newcastle RVI to see an eye specialist. Why luckily? The eye specialist had been a kidney doctor. He focused on my urine tests, and after what seemed like a lifetime said “you might have Wegener’s Granulomatosis”.
Then it was chemotherapy and high dose steroids. I started to feel much better within 24 hours. I must have looked a sight though. I had lost 16 lbs, hadn’t shaved for days, had a patch over one eye and generally looked like crap. After reading about WG on the hospital internet I’m not embarrassed to say I cried myself to sleep on more than one occasion.
I continued to improve but developed a DVT (left leg, both veins, ankle to groin). More hospital visits for tinzaparin injections and now Warfarin was added to my daily diet of medication – oh joy!
I’ve now been in remission for three years and steroid free for two years. I don’t compete on my bike now but I cycled 9000 miles in the past year. I’m running again (slowly) and aim to do the Great North Run, or maybe a cycling event in 2014 when hopefully I will raise some money for Vasculitis UK.
I hope my story helps anyone out there with similar symptoms to get an early diagnosis.