“Over the years, I have experienced many allergic sensitivities to a range of things from food types, preservatives, inhalants and more recently, corn products.”
As we see increasingly with food items, there is a range of alternatives to choose from, and with choice, there is no need to suffer uncomfortable or painful symptoms. So why are we not offered the same choice in New Zealand regarding glaucoma drops?
“I first realised my reaction to preservatives while using drops for dry eye.” Joan had to stop using the brand with preservatives as her eyes were stinging. “Thankfully later I had the choice of using a preservative-free brand, and no stinging.”
Her journey with glaucoma started in 2013 when she was diagnosed with Normal Pressure Glaucoma. Normal-tension glaucoma is treated the same way as the most common form of glaucoma, Primary Open Angle Glaucoma, by reducing the eye pressure using medications, laser treatment, and surgery.
Although ‘normal pressure’, Joan’s pressures increased from 7/8 to12/13 which was enough for the eye specialist to advise her that at that time there was no choice of treatment other than glaucoma drops. (with preservatives)
These drops caused Joan such discomfort. However, she found a way to minimise the symptoms by putting them in when she was in bed at night so she could turn out the light, and keep her eyes shut after administering them. Despite best efforts, her eyes and eyelids remained red, itchy, and sore.
At one point, after changing her drop to a different brand which was slightly stronger, she experienced a strong stinging sensation, itchiness and swelling under one eye. Eventually, the eye clinic specialist suggested she stop taking these drops & put her back to the one she started with.
Joan often felt unheard. On numerous clinic appointments she had repeatedly let medical teams know of her symptoms yet it often didn’t appear to have be recorded or known . “I appreciate all they do and see how busy they are, but this means they don’t have the time to answer my questions or resolve my issue with drops.”
Such is the impact of the preservatives on Joan that despite her clinical background and fear of going blind, she stopped taking the glaucoma drops.
“If preservative-free glaucoma drops were available in New Zealand and I could ring and say – is it possible to have preservative-free, and that was prescribed that is what I’d have. I’m even prepared to pay for it, but I am given no choice. I’m not opposed to any treatment, it’s the reaction to the treatment I’d like managed.”
In 2020 Joan had her first Selective Laser Trabeculoplasty (SLT), and although her pressures didn’t change much after this, it meant no drops! Later that year, she had her cataracts done, going home with a prescription of drops that caused her considerable pain and discomfort and once again her suspicions were realised as she discovered these drops also had the same preservative.
At the beginning of 2023, she had the (SLT) laser treatment again. The first time it was uncomfortable but nothing other than stinging from drops. But this time, she feels they added more drops of local, which stung at the time, however by the time she got home about an hour later, her eyelids were quite swollen and she could hardly open her eyes. She only just managed to peek through her eyelashes as she struggled to key in the security code to get inside her gate.
Joan is an intelligent and experienced nurse, who has found navigating the health system exhausting and frustrating, let alone the pain and discomfort associated with the preservative in glaucoma drops. She wouldn’t have had this experience if we had the choice to access preservative-free glaucoma drops in New Zealand.
Thankfully SLT (laser) is available these days and widely used to manage patients, like Joan, who cannot tolerate the preservative in glaucoma drops. If you want to know more about laser SLT click here or speak to your eye specialist.
If you would like to help Kiwis get access to preservative-free drops, you can fund a vital clinical trial. The evidence generated from this study will provide a robust foundation for Glaucoma NZ to approach Pharmac, advocating for the funding of preservative-free glaucoma drops. Donate here.
Glaucoma is a complex disease to diagnose and to treat. This is an account of Joan’s experience living with glaucoma. If you have any questions or concerns, please contact us or talk to your eye specialist.