It started in late October, 2004 and began with a small blur, the sort that comes with a smudge on a contact lens. A few days later, there were flashing lights on the edge of vision, a bit like a pond rippling when a stone is thrown in it and walking across an unlit car park after work, the eye with the slight blur and the occasional flashes did not see so well in the dark. There was no redness, no photophobia and no pain – the three obvious to the patient symptoms of iritis. Apparently I’d had it before, but without these obvious symptoms, I hadn’t been aware of it and no optician, nor contact lens specialist, had told me of its presence.
A line of vision had been lost from my left eye’s sight at the point of diagnosis and I was sent off for blood tests and x-rays to investigate underlying disease, since this was not a first attack. I was assured the eye’s retina was fine and that the iritis would not affect my right eye. A brief explanation of the difference between infection and inflammation was given, but I doubt I understood what inflammation actually is. I was relieved to hear that the lost line of vision would be restored after about six weeks of eye drops.
The second emergency eye clinic visit brought the news that tests were all normal and I could start reducing the Maxidex eye drops the next day from every two hours to six drops a day. I was to return the next week. I relaxed a bit thinking things were going as expected and with any luck, my eyes would be back in contact lenses for Christmas, New Year and the parties.
The next week, the eye had posterior inflammation, the drops were upped to every two hours again and I was told to be prepared for a steroid injection into the eye if things had not improved two weeks later. I have no clear memory of what was said about inflammation two weeks later, but there was no injection. I was told I could stop using the Atropine dilating drop, but should maintain the steroid dropping schedule and continue with the ointment at night. I was being moved into the eye clinic proper.
The appointment came three weeks later and I left the clinic feeling wonderful. There was no inflammation, but I was to use the steroid combined with antibiotic ointment in both eyes, every night. This was to serve as a preventative measure in the unaffected right eye – the specialist later said he had never heard of anyone doing this. The taper of the steroid drops began. Reducing the drops by two every four days took me down to the final one drop a day when I was back in clinic.
The day before the appointment, my left eye filled with floaters and cobwebs and the right eye had flashes. My left eye had lost another three lines of vision and I now had intermediate uveitis in both eyes. Today, I know exactly what the different types of inflammation are, but then, I hadn’t a clue. However, with both eyes affected and sight clearly at risk, I asked if the clinic had a uveitis specialist and if I needed to see one. I was told it was probably a good idea and the young doctor tried to cheer me up by saying, ‘We will beat this thing.’ The Maxidex drops were changed to Pred Forte. My plans for Christmas and the New Year altered. The manner in which sight had deteriorated in only seven weeks frightened me too much to drive anywhere and so I booked flights instead.
During the Christmas break, I had time to read on the internet and found the Mersi site. There is a mass of information there, but it felt overwhelming. Even though I understood so little, other patients made it clear that a uveitis specialist was needed. I returned to the clinic in the January expecting that the referral process had begun. The nurse told me there was no record of the request in my notes. I saw the consultant for the first time that day and also for the first time, a detailed explanation of uveitis was given and my request for referral agreed. By that time, I had been in touch with the UK Uveitis Information Group and had been given the name of a specialist some thirty miles away. Without the help of the UIG, I would not have known who to ask for and may have been referred to someone closer with an interest in uveitis, rather than a uveitis specialist.
At the next appointment, the consultant considered giving me a course of high dose oral steroid, but decided to wait a further month since the inflammatory cells were not on any important structures in my eyes. I knew when and if that time came, I’d ask for the eyes to be injected rather than subject my entire body to the side effects of oral steroid.
The time did come, a week before the next appointment, but there was no one available to inject steroid and the Pred Forte for my left eye was replaced with Acular to treat cystoid macular oedema. I’d lost central vision in the eye and could just about see the big E at the top of the chart. I was terrified. After only three months, I was effectively blind in my left eye. I couldn’t bear to think what would happen to my right eye. I refused to take high dose oral steroid and asked what the safest, highest dose of a non steroidal inflammatory was.
I spent the weekend in shock and knowing the NHS appointment with the specialist was still weeks away, I realised the sooner I got there, the better. My medical insurance company agreed to fund a private appointment. The specialist’s secretary told me the appointment could only be brought forward a week and she also told me that the specialist had slotted my NHS appointment into his private patients’ clinic in order to see me as quickly as possible. In the years to follow, this secretary rescued my sanity on numerous occasions.
The next week at the local clinic the consultant was not present and I was seen by the senior doctor in charge. This doctor told me I didn’t need to see a specialist.
A week and a half later, I saw the specialist, regained some hope and was given a plan for treatment. While I’d gone prepared to have an injection into the left eye, I was overjoyed when the specialist said the steroid could be injected into my thigh and it would travel up the bloodstream to both eyes. I had the injection there and then. The specialist asked how important it was for me to find a cause for my uveitis and ran through a number of possible causes. By then, I knew I wouldn’t cope with a second named disease to add to the uveitis and I was also aware that the same drugs were used to treat various autoimmune conditions. Whatever it was would be treated by default.
Six weeks later, the right eye had only trace cells, but the left had inflammation on the optic nerve. The treatment for this was three pulses of iv steroid over the course of a week and someone on the support board helpfully informed me I probably had MS.
After the first infusion, I felt the sight in my left eye was worsening and as steroid euphoria gave way to steroid depression, I went to the specialist’s hospital’s emergency eye clinic rather than my local clinic. I spent the May Bank holiday there and was treated by doctors who knew about uveitis. I was told to continue with the infusions. The specialist later told me that I was his patient and I was to ring him immediately when things changed, Bank Holiday or no Bank Holiday. The side effects increased with the second infusion and two days after it, I sat weeping all day long and most of the night. I nearly didn’t go for the third infusion. Trying to hang onto the idea that this treatment was possibly saving my sight brought no solace whatsoever. If this was the price of sight, it simply made life itself untenable. Fortunately, the third iv did not result in the same depressive crash some thirty six hours later, but did cause prolonged digestive upset, insomnia and a rather dangerous euphoric mood.
Six weeks after the iv steroid, the sight in my right eye faltered and an OCT was done but the macula was fine. No reason could be found for the reduced acuity. The steroid had made no difference to the macula oedema in the left eye. It was time to begin second line treatment – immunosuppression with methotrexate and to get a vitrectomy for my left eye organised.
A month or so later, I had a consultation with the retinal surgeon who broke the news that both eyes had the beginnings of posterior cataracts and the right eye, which had recovered its acuity as suddenly as it had lost it, now had a high ocular pressure of 40.
The steroid drops the eye was receiving were stopped and a glaucoma drop, Azopt, started. Within three days, I was constantly in tears and didn’t know why. After two weeks, the Azopt eye was inflamed and I made an appointment with the specialist. The left eye was also inflamed again and the plan for a vitrectomy postponed. The methotrexate was increased, the Azopt stopped and the right eye was started on the weak steroid drop, Vexol, which wouldn’t raise pressure. That eye now also needed a dilating drop because the pupil was sticking. Two weeks later, I was beginning my first period of extended, visual impairment. Without the Azopt, I stopped crying and mostly managed reasonably well. I was self employed by then and had to pull out of a short term contract and send the unfinished work back. While I received considerable understanding and an assurance that future contracts would not be affected, I became seriously worried about how I would manage financially, if unable to see well enough to do this work in the future. My GP had advised me to apply for an early ill health pension and this was still being processed. I had no certainty that it would be approved. The computer was a lifesaver – not having the sight to drive, I was able to order groceries online and kept myself occupied by trying to learn to touch type. That wasn’t successful and I ended up buying stick on letters in a huge size for the keyboard.
With the Vexol eye drops not working well, the steroid was changed back to Maxidex. Ciclosporin was added to the methotrexate and with the inflammation back under control, and sight returned in the right eye unexpectedly overnight, there was another appointment to arrange a vitrectomy for the left eye. At this appointment, the right eye had a pressure of 30 and a new glaucoma drop was prescribed, one which had a lower chance of inducing depression as a side effect. Even so, I gave up. I’d had enough. I didn’t go back to have the pressure checked a week later and when reason returned, I decided to give it three months on the ciclosporin and methotrexate to see if inflammation was controlled and this was still a fight with some hope of victory. If it wasn’t, I considered trying to live blind, without drugs, all the appointments and all the misery of dashed hope. Every thing I read said that those who lost sight suddenly, adjusted in about six months. By that time, an ill health pension had been approved, but there was little joy because I’d lost so much more than sight by then and I’d definitely lost ‘me.’
When I did go back to the specialist, and he was so nice about my absence, it seemed as though the ciclosporin was working but it was necessary to add a second glaucoma drop and once again I found myself in the misery of Azopt. I put up with the constant tears for several weeks and then could tolerate it no longer. Some new glaucoma drops were tried but I couldn’t tolerate those either and these drops accelerated the growth of the cataract and caused cystoid macular oedema in my right eye. With my specialist on holiday, another specialist stating she would not change anything and the change in immunosuppressant treatment to cyclophosphamide delayed through administration, I stopped using the prostaglandin glaucoma drop and went back to Azopt. I was blind again, tearful again, but knew that Azopt might have some effect on the macular oedema as well as reducing pressure. Life was grim and a friend came to stay to help. I applied for disability living and mobility allowances and a social worker for the blind came to visit.
Both eyes now needed cataract surgery and vitrectomies and the right eye was being monitored by a glaucoma specialist. It was decided to combine cataract surgery with vitrectomies and to reduce post op risks of further inflammation, an iv pulse of steroid was considered. This filled me with dread – I’d be off my head, the happy steroid drunkard, within thirty minutes, and within thirty six hours, I’d be in steroid hell, also steroid had already caused high ocular pressure and given me cataracts. At that time, reports were emerging on the use of Avastin for macular disease and I asked if Avastin could be substituted for steroid. The surgeon thought it would work.
After the combined cataract and vitrectomy surgery on my left eye, when the eye guard was removed the next morning, a distorted world greeted me, but there were no blobs, threads or spidery webs in my vision and for the first time in two years, I had more than enough sight from the eye to get around and could even read with it with x2 reading glasses. My specialist had restored the ‘some sight’ he’d promised at the first appointment. The right eye followed some six weeks later and, at first, I was overjoyed. I could see and I could see well without glasses.
At the second follow up appointment, my right eye had a pressure of six so there was still no need for a glaucoma drop. I was told to reduce the steroid eye drops from four times a day to twice a day. As luck would have it, an appointment with my glaucoma specialist which had been arranged two months earlier, fell due a couple of days later. The pressure in my right eye was then 2 and my visual acuity had reduced. He told me to go home, do as little as possible and put Pred Forte into the eye every two hours to raise its pressure. If this didn’t raise pressure, he’d have to operate the next week. I was booked in for an OCT and an ultrasound of the eye before seeing him the next week. He suspected a ciliary cleft.
A week later, pressure had risen and now the eye required a glaucoma drop to reduce it. In the weeks that followed, it felt as though I was right back into the circumstances which ended with the eye requiring a vitrectomy, only this time, the optic nerve was pale and damage was suspected. I no longer had the sight to drive. The glaucoma drop lowered pressure but caused cystoid macular oedema and changing it to another drop did exactly the same. My specialist was out of the country and he sent a message to see the retinal surgeon. When an OCT showed something similar to an erupting volcano in the image produced, my medical insurance company agreed to a course of three Macugen injections (another anti vegf) for each eye. After the first injection into the left eye, the private hospital could not manage to schedule the remaining injections in a timely manner and unwilling to allow my right eye to undergo ‘wait and see’ like the left had done in the local clinic, I ended up having the rest of the injections in London. By that point, my GP decided I’d become clinically depressed and offered anti depressants. I asked for counselling instead. Had I received counselling then, it might have been helpful in reducing the rage and desperation I felt, but it would be nine months before I reached the top of the counselling queue.
Both eyes received their anti vegf injections in London and each time, sight was greatly improved by the time the return train pulled into my local station. On one occasion, having been guided onto the train in London and into a seat, the guard told me someone from my local station would come on board and help me off when the train arrived in my home town. I tried to tell him this wouldn’t be necessary because I’d be able to see again by then and realised from his reaction, that to him, this must have sounded like Lazarus rising from the dead.
Back with my specialist, treatment was changed to Infliximab. As I left the hospital after the first infusion, I knew I had the sight to drive again. With persistent slight inflammation in the week or so before an infusion, the interval between infusions was reduced to six weeks and methotrexate was increased a little higher. Under this regime, both eyes remained inflammation free and the cystoid macular oedema cleared completely from my right eye. My left eye received YAG to clear cells from the artificial lens and for the past two years has provided the contrast sensitivity my right eye lacks. The artificial lens in my right eye also needs YAG, but given this eye provides the best sight, usually 6/6 these days, YAG is being delayed through the risks associated with it. My left eye developed a scotoma after its YAG and for my right eye, the risk of a pressure spike on an already damaged optic nerve makes all concerned nervous. I have not yet lost any field of vision to glaucoma and my specialist hopes this may not happen.
I have no doubt that if my specialist had not treated me, today I would be legally blind and would probably have been so for several years now. I’m one of the lucky ones who receives anti tnf therapy and I’m immensely grateful that our health service provides this. Our uveitis specialists simply transform lives. I think they know the difference they make and I, along with many others under their care, appreciate this. I’m not cured, but I can still see and that, the wish to see, has been the greatest thing I’ve wished for in my life so far.