Changing Vision in a PF Patient, and What Can Help
I’ve had the same prescription for glasses and contact lenses for 20 years. I was diagnosed with pulmonary fibrosis almost three years ago, and didn’t notice any changes in my vision for the first two years.
First, I noticed things were a little blurry at a distance. I thought maybe the medication I was taking, mycophenolate (CellCept) was leaving a film on my contacts, so I started using a different cleaning system. This helped for a while, but then my eyesight continued to worsen. I was squinting a lot, and pretty soon I couldn’t read words on my TV during the news like I used to.
Off to my eye doctor
I visited my eye doctor four weeks ago and she noticed that my vision had worsened significantly in the last year, especially in my right eye. She did a thorough exam, dilated my eyes, checked for cataracts and glaucoma, and took digital retinal photographs of my eyes.
She was surprised she could not correct my vision to 20/20 no matter what she tried. The diagnosis was severe dry eyes, with some changes to the retinal blood vessels, as well as the very beginning of cataracts. My eye doctor didn’t seem to know much about how pulmonary fibrosis affects vision, so I did some research of my own, including patient blogs and a PF Facebook group I belong to. Here’s what I found:
Many patients with PF experience changes in their vision
A lot of patients were asking one another about their experiences because they hadn’t gotten a lot of solid information from their doctors.
Many patients experienced dry eyes. Here are some reasons:
- Chronic hypoxia (low oxygen levels in the blood) tend to make eyes dry;
- The use of supplemental oxygen (especially high flow) tends to make eyes dry because the sinuses and eyes are connected, so that some of the air blowing up the nose is also reaching the eyes, causing dryness;
- Patients wearing contact lenses may have additional problems with dry eyes, because contact lenses reduce the amount of oxygen getting to the eyes.
Many patients developed cataracts, especially related to the use of prednisone.
Many of those taking prednisone reported having cataract surgery.
Some studies report that blurry vision is found among people with pulmonary fibrosis.
FDA reports show that this is true, especially for men who are 60 and older, take the medication Esbriet, and have gastroesophageal reflux disease. Another study reports changes to the blood vessels in the eyes, as I have.
Treatment prescribed by my doctor
- Eye drops every two-three hours (Refresh Optive Advanced);
- Ointment when going to bed (Refresh P.M.);
- Warm compresses on eyes for 10 minutes (meant to soften any clogs in tear ducts);
- Vitamins for healthy eyes (I take Vision Formula 50+ by Equate);
- No more contact lenses; I have to switch to glasses. One neat possibility for those on 5 lpm or less of oxygen are Oxy-View glasses. These glasses run an oxygen tubes through the frame with the nasal prongs coming from the nose pads of the glasses. I’m on 8 lpm so I won’t be able to use them, but have heard wonderful reviews from others who use them.
I saw my doctor several times, and my vision got a little better after four weeks of this treatment. My vision was corrected to 20/25, which I’m very happy about. I see my pulmonologist next week, and will ask him for a referral to an ophthalmologist who has experience with how pulmonary fibrosis affects vision.
If you’ve had changes in your vision, please talk to your doctor about it and get the help you need.
I’d love to hear from you! What is your experience with your vision? Have you seen it change over the course of your illness? If so, how? And what has helped? I love the way we can all connect and learn from one another!
Please share this post with anyone you feel could benefit, or on social media. We’re in this together.
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.