Thank you Tabby for sharing your story! Tabby has had PIC since 2019, but noticed another change more recently...
Firstly, I would like to thank Beth for inviting me to share my story as well as for all that she does to raise awareness of our condition, Punctate Inner Choroidopathy commonly known as PIC.
Around 4 years ago I was diagnosed with floaters in my left eye. For several days I had what can only be described as a shadow like a long hair over my eye, nothing I did got rid of it and it began to irritate me and cause headaches. I was able to get an urgent ophthalmology appointment and diagnosed with PVD (Posterior Vitreous Detachment). PVD is when the vitreous gel at the back of your eye starts to break off and detach from the retina. However, I believe this may have been my first flare and where it all started.
Fast forward to November 2019, I'm now 29 years old. One day I woke up and I had developed a small round grey patch in my left eye. I thought it was just another floater, however over two to three days it got rapidly worse. I ended up with around 50 to 60% vision loss in the form of a large black circle and then to make it worse the flashing lights started. Unless you are a PIC sufferer it may be difficult to understand the flashing lights. The simple way I can describe it as if you were to put a finger covering half of your eye and then a torch the other side and constantly flash it on and off. It's scary, it makes you feel sick, it gives you headaches, it's just horrible. This prompted me to call the optician. I was given an appointment within 30 minutes as they were concerned, I could have a detached retina. I was told the optician could see a lesion on the back of my eye and that he would do an urgent referral to the hospital and I should be seen within a week. I will be honest in my head I thought the worst and after doing a Google search, I wondered if I possibly had cancer.
It was another 10 days of suffering and worsening vision before I had my appointment at the eye clinic at my local hospital. During my visit I had multiple tests including peripheral vision tests, OCT scans and blood tests. I was passed to two different consultants as they were unsure on my diagnosis. I was told I would need to come back in a few days for a fluoresceine angiogram as these were only done on certain days of the week. During all this I had to sign myself off work sick as my vision was worsening, I was feeling bad in myself and was not safe to perform my job or drive. My poor vision and the flashing lights also left me extremely disorientated and requiring the support of my fiancé to get around when not at home.
I went back for my fluoresceine angiogram, a rather unpleasant procedure, I had dye injected into my veins which feels warm and makes you feel sick, it lasts around 20 minutes and there is constant flashing while photos are taken of the back of your eyes. After the angiogram, the dye turns your skin and eyes orange and everything you see is a different colour which adds to the disorientation. I was then called into the consultant’s office and told I had PIC, when I asked him to write it down for me, he gave me a scrap piece of paper with P.I.C written on it. I asked for leaflets and he told me the condition was so rare there were not any. He gave me very little information only that I would be stuck with this for life and could end up needing regular injections in my eyes. He told me I could google the condition and prescribed me 80mg of prednisolone. Prednisolone is a steroid which is used to treat inflammation and although very good at its job it comes with unpleasant side effects. 80mg is an extremely high dose of steroid and due to this I suffered dizzy spells, nausea, headaches and weight gain linked to increased appetite. The largest Prednisolone tablet available is 5mg which meant at one point I was taking 16 tablets as well as having to take omeprazole and calcium to counteract some of the side effects of steroids. Luckily, the dose was weaned down over time. The steroids did work well, and my eyesight began to improve, but I did have to continue the steroids for six months until May 2020.
I left the consultants office in tears feeling like my life was over. There was very little information on google, however I learnt PIC is an autoimmune condition, its chronic and I could lose my sight. This left me in low place until I found the PIC Facebook group and I finally had people that could explain the condition to me, I heard the good stories and the bad and felt better prepared to live and manage my condition. (Thank you to everyone on that page).
I was referred to Moorfields eye hospital in London and had my first appointment in January 2020, it was confirmed it was PIC. I had 2 lesions, one large and a smaller one that showed signs of old scarring. I was commenced on mycophenolate mofetil an immunosuppressant, I take 1g twice a day (which is 4 tablets a day). Luckily, the only side effect I have suffered with these is an irritated stomach which I continue to take omeprazole for, but there are other downfalls to this medication. Regular blood tests are essential, in the beginning its every two to four weeks, now its every three months. You cannot get pregnant while on these medications, considering I am 30 years old and I do not have children yet, this is very difficult to deal with as the plan with immunosuppressant's is for me to be on them long term if not lifelong. There is hope of us trying a planned break at some point for me to try and conceive though.
I visit Moorfields regularly and have phone appointments in between. In October 2020 I started to get increased blurring and strain in my eye, I was seen within a week and although the scans looked ok, I was put back on a 6-week course of steroids, which seemed to correct the issue. I should add my eyes never returned to normal after I was diagnosed as my lesions left scars. I now require glasses for distance, my left eye is blurred, and I have floaters in both eyes daily. I was told at my latest appointment on the 17th February, that my eye is stable and do not need steroids at the moment, which is fantastic news! They will see me in another 8 weeks just to check but we are going in the right direction!
Having such a rare and specialised condition means that I have to be cared for by the specialists in London (around 2 hours from my home) and although I’m very grateful, it’s also frustrating as it means that every time I have an appointment which can be anything from monthly appointments to three monthly, It involves taking a day off work, travelling to London, paying all the costs associated with that, paying for medication and most of my appointments are four to five hours due to the different scans and exams I have to have before I am then seen by the consultant. Also being diagnosed just before the pandemic means I have been shielding and needed to be driven to London for each appointment to avoid public transport and I can’t drive myself as my eyes have to be dilated for the scans and you’re not allowed company to your appointment, so each visit I sit alone in a waiting room, with my eyes wide and sore feeling sorry myself.
But that’s ok, its ok to feel however you want and that’s the point I want to make, its ok to feel sad, angry, lonely but remember your never alone, were in this together!
