Patient Story
Birdshot Uveitis
My Birdshot story…
Late 2019 I developed a floater in my right eye. I mentioned it to my optician only to be told “it's an age thing, and it'll go away.” It didn't. Over the next few years it got bigger and more denser and by 2022 I had my own personal flock of starlings, flying beautifully coordinated in my eye, I also had a permanent fuzzy feeling around both eyes, driving at night had become impossible as were bright sunny or snowy days without sunglasses; screen work was also becoming increasingly more difficult. My optician still thought it was nothing to worry about – he became my ex-optician. December 2022 my new optician immediately recognised the severity of my floaters in both eyes, the brain obviously works in mysterious ways! I was referred to my tertiary eye hospital and seen immediately at the first clinic 3rd January 2023. Two weeks later, after giving enough blood to feed a small family of vampires for a month and a plethora of eye tests, chest x-rays etc. I was diagnosed with Birdshot Uveitis.
At first, I was relieved. I wasn't mad, there was something wrong with my eyes. I was right all along. Then I became scared; I might lose my sight. Thankfully my NHS uveitis team were very reassuring and despite having had Birdshot for 3-4 years it had been ‘caught' relatively early. Now I just needed to find the right cocktail of medication that would convince my immune system that it could stop trying to fight the imaginary infection it thought I had in my eyes.
Initially, like most birdies, I began my treatment with a large dose of steroids to reduce the inflammation. I also incorporated 2,000mg of mycophenolate mofetil, an immune suppressant designed to calm down my immune system and take over once I stopped the steroids. The steroids boosted my energy levels, my floaters nearly vanished, and life was really good again. However, as I began to taper off and reached the 7.5mg dosage, I experienced a flare, and the inflammation returned. I had to do a typical prednisolone yo-yo, increasing back to 10mg and tapering more gradually. Eight weeks later, I introduced tacrolimus to my regimen to complement the mycophenolate. To be honest the first week on the tacrolimus was hard going, I had diarrhoea and stomach problems all week and lost my appetite; with hindsight starting a new drug while you're on holiday wasn't such a good idea.
Fast forward to July 2025, my body appears to have adapted to my medications, and my eyes have remained stable for a year. Yes, I still experience side effects from the medications, and on some days, my smaller floaters (which will never completely go unless they're surgically removed) are a bit more noticeable and harder to ignore, but I can live with that. Throughout my journey, my consultant and the senior pharmacist, and the uveitis team have been truly amazing, and for that, I will always be eternally grateful.
~ Nina
If you are a patient suffering from inflammatory eye disease, and would like to share your story on our website to help raise awareness, please contact us on info@uveitisstudygroup.org