It was early December 2004 that I started experiencing symptoms – my right eye was red, scratchy and a little painful. I ignored it for a while, but it got worse.
On Sunday 12 December, the light sensitivity was severe – I remember sitting in the lounge writing Christmas cards by candlelight – in the middle of the day and with closed curtains – as any other light hurt too much.
A business trip to Birmingham on the Monday meant that it was Tuesday before I could get to the GP – who prescribed eye drops for conjunctivitis. Having previously had conjunctivitis, I was relatively certain that this wasn’t conjunctivitis – but fortunately the GP also said to go to the Eye Unit at the local hospital if things hadn’t improved within 24 hours.This was the first time I knew something like this existed within my vicinity – and my first visit was on Wednesday 15 December 2004, where I was diagnosed with iritis. Dilating and steroid eye drops were prescribed, with a follow-up scheduled for the following week. I walked out of the clinic with a piece of paper on which ‘uveitis’ was written – I was certain that I wouldn’t remember it otherwise – and did some research when I got home…
Things didn’t really improve much, the light sensitivity and pain was still there (despite the dilation) – but I couldn’t face spending my birthday the following Monday in the Eye Clinic queues! So back I went on Tuesday, earlier than the planned follow-up, but I was booked to go on a bus tour in Morocco with my brother, due to leave that Friday… It was a very long day in the Eye Clinic. One of the nurses even commented that she could see I was in pain, but due to various other emergency cases I was only seen after 5pm, to be told that I needed a steroid injection in the eye…
Fortunately I’d read about this sometimes being necessary so it wasn’t a complete shock, and the consultant on duty that day was very gentle! I travelled home on the bus that night with a patched eye… my check-up the following day was good, the injection had done the trick and the inflammation was finally responding. The eye clinic did not see a problem with me going on holiday, although my dad (a paediatrician) and a GP family friend certainly did – so I took their advice and decided not to travel. The thought of possibly needing another injection into the eye in a country where English wasn’t the first language didn’t appeal… never mind the logistics of a bus tour with refrigerated eye drops and not being able to see much anyway due to dilated pupils! It was sad not spending Christmas with my brother who did go to Morocco, but friends kindly took me in and things continued to improve, until I was off all drops in February 2005.
A few short months later, in July, by then familiar symptoms returned in the right eye. Needless to say I didn’t wait very long to go back to the eye unit – roughly 2 months of treatment resolved that flare. I was back again at the clinic that November – a number of blood tests and x-rays were done at this stage, to try to establish any underlying cause. I also asked for a referral to a consultant. This consultant appointment was rather disappointing, as not only did he not have the results of my tests, his view was that I should simply continue as I had been – going to the Eye clinic when I had symptoms. I chose not to see this consultant again, and found out at the Eye Clinic in January 2006 that I was HLA-B27 positive.
I’d heard that uveitis can burn itself out, so when things were quiet throughout 2006 I was hopeful that perhaps it was three strikes and out! But on Christmas Day 2006, while visiting my parents in South Africa, I started feeling familiar symptoms… this time in the left eye. Not exactly the Christmas present I’d hoped for … an emergency ophthalmologist appointment on Boxing Day confirmed an anterior uveitis flare and got me back on steroid drops.
This was the start of a frustrating year. It became a cycle of the left eye flaring, going to the Eye Clinic, treating it successfully with steroid drops, (the left eye has never flared as severely as the right), with the next flare starting 2 – 4 weeks after discontinuing treatment… I knew this wasn’t good, and would lead to further problems if I continued like this. After more online research, finding out about more proactive treatments, I provided some of this info to my GP who was happy to refer me to the ocular immunologist of my choice.
At my first appointment with this consultant, I found out I already had steroid induced cataract in the left eye – at the early age of 30. Despite this unwelcome news, I finally had the sense that I was on the right path to ensure the best outcome for my eyes. I immediately started on immune-suppression at the end of September 2007, with the idea of retraining the immune system to not attack itself. Some flares continued, although I was able to reduce the number of drops used overall by following the consultant’s advice and tapering the drops much slower than I’d previously been advised to do. The medication regime has since been tweaked a number of times, through dosage changes and additional medications temporarily being added.
I also started developing joint problems towards the end of 2008. It had always puzzled me that the Eye Clinic would ask whether I had back problems – but now that I knew I was HLA-B27 positive, I knew there was a higher risk of a number of auto-immune conditions, including some rheumatologic conditions… Being woken in the early hours of the morning with severe pain, not being able to turn over or get out of bed easily, pain which improved if I was able to walk around and got worse when I didn’t move – it all sounded suspiciously like Ankylosing Spondylitis to me. This was echoed by my ophthalmologist, so I asked him for a recommendation of a rheumatologist as it was clear they would need to work together. I already knew my GP was willing to refer me, even though by that stage I’d got many of the joint symptoms under control by greatly reducing the amount of starch in my diet and being more active.
My first rheumatologist appointment was in August 2009. Various investigations were done, including x-rays and an MRI, which confirmed that I had sacroiliitis (inflammation of the sacroiliac joints) – two small joints which can make life incredibly uncomfortable! Fortunately I only rarely experienced this pain with my reduced starch diet, so the rheumatologist suggested that I take ibuprofen as needed for joint pain, although he also discussed biologic treatments with me, which could be a possible future treatment.
In late January 2010, the right eye flared again. This was very disappointing after it had been quiet for so many years and we’d already started to taper the methotrexate dose – but the ophthalmologist confirmed that this was not unusual with HLA-B27 associated uveitis. I had consultant appointments on consecutive days in February, at which the rheumatologist stated that he favoured changing my immune-suppression from methotrexate to anti-TNF, which would be effective for both the uveitis and the sacroiliitis.
Unfortunately, the flare in my right eye worsened and the left eye also flared – my first bilateral flare – so I had the opportunity to discuss this treatment option with the ophthalmologist at an emergency appointment a week later. That Wednesday evening, I started on an additional immune-suppressant to bring the flares under control – it was reassuring to hear on the following Monday that both eyes were now at 1+ cells, after the right eye had been severe at 4+ the previous week!
I’m thankful that the rheumatologist was able to arrange access to the biologic treatment very quickly, and I added Humira to my current medication regime in mid March. At the time, I was recovering from a cold and the eyes were beginning to flare in response to this… within 24 hours of my first dose of Humira, this had improved and I could see a lot better than before. I’d known that I couldn’t see well – I had sat on the floor directly in front of the TV to watch the Winter Olympics – but it’s only since regaining that vision that I’ve realised how bad it was. Fortunately, living in London I don’t have a car as I certainly didn’t have enough vision to legally drive, but even spotting the right bus was a challenge. I had an ophthalmologist appointment just over a week after starting Humira – it was the best appointment I’ve had in years – both eyes were cell and flare free!
It’s been a long road to this point, and I know it doesn’t end here. I’m in the process of tapering – very slowly – off the steroid drops in both eyes, and once that’s complete we’ll start tapering off some of the medications as I’d prefer not to be on three immune-suppressants for too long! But I’m hopeful that we’ll achieve this, as I continue to marvel at being able to see the definition of bricks in the wall opposite my kitchen or read the license plates of the cars parked outside. It is disconcerting to know that my uveitis is sight-threatening, but on this medication regime I’ve already regained the vision which was being robbed from me and I have every reason to continue to be hopeful.