Changing Vision in a PF Patient, and What Can Help

Changing Vision in a PF Patient, and What Can Help

Just breathe, passionate help for the PF journey
I started noticing a change in my vision about a year ago.

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.

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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.

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39 comments

  1. Dear Kim, Thank you for sharing this with us. I too have noticed that my vision in my right eye has become increasingly blurry over the last year. I was diagnosed with IPF 2 years ago and have been on Esbriet for about 6 months. Esbriet seems to be helping me cough less and etc. But, the blurred vision worries me. I will go to my eye Doctor and see what he says. Thank you for sharing and for helping us all along our way. Best Regards, Dana

    • Hi Dana, Thanks so much for sharing your experience. I’m so sorry that your vision has been affected too. Yes, let’s keep one another posted. It’s my pleasure to write this column. We all have so much to share with one another. Blessings to you 🙂

  2. Patty Hunt says:

    Very interesting and informative. I appreciate any news on PF because so few people in my town have ever heard of it.
    Thank you- I feel connected.

    • Hi Patty…thanks so much for your comment. It is good to hear from you. I know what you mean, I never ever heard of PF before being diagnosed with it. You made my heart smile when you said, “I feel connected.” When I started writing this column, one of my goals was to try to create a community where we patients could support one another. I think it’s happening!

  3. Petrea says:

    Hello Kim. I found this very interesting. Thank you.
    I take Mycophenolate (2500 mg per day) and Prednisone (low dose, 5 mg per day) plus other meds.
    I notice blurring at times. I’ve asked my doctor and my eye doctor but I have good vision and no eye disease was found.
    I mostly have no problem but it is hard to read the tv screen and printed page is easy with good lighting but if it isn’t well lit then I can’t make out the letters. And when I might be a little tired and have to drive to pick up my kid from work, etc, things are a little blurry.
    This week my eye have been itchy.
    I am trying to limit my ‘screen time’ to see how that helps.
    I use eye drops when it is too bothersome but I wonder if I should just try using them daily to see if it helps.
    I am currently not using supplemental oxygen as I rarely drop below 90%.

    • Hi Petrea,
      Thanks so much for sharing your experience with your vision. I’m so sorry you’re dealing with blurry vision too. I’d encourage you to try the drops several times a day, and see if it helps. I hope it does!!! I’m so glad you left a comment. I hope you’ll comment again soon. Many Blessings to you…

  4. David says:

    Thanks for this! I am 66 male diagnosed in 2014, taking Esbriet for 2+ years now. Am experiencing blurred vision and I was wondering what was going on. I also have Gerd. I will bring this up to my eye doctor next visit soon. I do have dry eyes that they discovered and told me to be using lubricant drops. Now I’m gonna be paying more attention to all of this, thanks

    • Hi David…thanks so much for sharing your experience. It helps so much to hear other patients experience. I do encourage you to use the drops and ointment. It has helped hydrate my eyes and improved my vision. It took about three weeks to notice a difference, so hang in there! I hope you’ll comment again. Blessings, Kim

  5. Dave Raedeker says:

    Hi Kim, I have problems with blurry vision. I made an appointment to see my eye doctor to find out about my sight problems. I will let you know what he says. I am talking Esbriet and it is about one year ago when I began the medication. Thanks for your support. Dave

  6. Robert Heyer says:

    I was diagnosed with IPF in December, 2012. I was taking Prednisone and Flonase for my allergies. My vision got so bad I needed additional lite and a magnifying glass to read – Cataracts. I had them removed in the summer of 2015. I received the gift of a single lung transplant in March of 2016 at BWH. While I was in recovery I noticed problems with my vision particularly in my left eye. It was like looking through a shear drape. After a couple of months of recovery I went back to my eye doctor who told me the pressure in my left eye was serious. Glaucoma. I went through two operations on my left eye and I am in the process of waiting for my vision to return.

    • Robert…what a road you’ve been on. So happy to hear of your transplant, but s sorry to hear of your eye problems and loss of vision. I hope your vision returns soon. Thanks for sharing your experience with us.

  7. Maureen Lake says:

    Hi, I am 62 & have had IPF for 2 yrs, have had GERD for several years. I’ve worn glasses most of my life. Only use O2 on exertion at 1-2 liters. Last year I was told by the Ophthalmologist, I had what could turn into dry eye syndrome & for now to use tears,but if it worsened to come in & he would check again. About 12 years ago I had 2 torn Retina. My mom also had IPF & was diagnosed with Fuchs Syndrome, she did not wear O2 at .

    • Hi Maureen, so appreciate you sharing your story. I’m so glad to hear you are being seen by your opthomologist who is keeping an eye on you. You and your family have been through so much!

  8. Mark Kraczkiewicz says:

    My IPF was first diagnosed because of “floaters” in my right eye. My ophthamologist suspected sarcoidosis and wanted to prescribe prednisone to reduce inflammation and diminish the floaters. But first I had to be checked to insure I did not have TB. My primary care doctor became involved; X-rays, CT scan, visit with a pulmonologist followed. Rapidly thereafter a lung biopsy confirmed IPF. My floaters still persist; at times they are less bothersome. In the past heavy doses of prednisone improved my vision, but at the cost of increased eye pressure and the risk of glaucoma. I recently had cataract surgery in both eyes; my opthamologist claimed the surgery might reduce the floaters. It has not. I too have dry eyes and am ocasionally taking zaditor, which helps somewhat.

    • Hi Mark, thanks for sharing your experience with IPF and how it has affected your vision in a variety of ways. It is so hard when medication we take for IPF gives us other very serious issues to deal with. I’m glad the cataract surgery is helping your vision. Blessings to you…

  9. Carolyn Ridpath says:

    Thanks so much. I have been whining about my eyes to no avail. The impact of oxygen makes a lot of sense, as do your suggestion for alleviating the symptoms.

    • Hi Carolyn, I’m so sorry no one has been listening to you about your eyes. Ugh…so frustrating! You can see from all these comments what a common problem it is. It is so good to be validated by other patient’s experiences. I hope some of the suggestions my doctor made will help you too. Take care…

  10. Brian Sowter says:

    Hi Kim
    Can you say any more about GERD and blurred vision in particular, what is the assumed mechanism? I have IPF and I am on Ofev. I also have Laryngo Pharyngeal Reflux (LPR) which I am about to have investigated. I take lansoprazole but I am considering having Lynx reflux management system fitted. Could this help my eyesight?

  11. Vivica E says:

    Hello
    I have experienced the same as above. Dry eyes and now some burryi vision in the mornings. I have been told I have Sojgrens disease and ANA. Diagnosed fibrosis in 2014 when I had pneumonia.
    No, doctors do not really understand this disease. It pays to do your own research.
    So thankful for this site.

  12. John Hubbartt says:

    I also am having vision problems. I was diagnosed with IPF in Nov 2013 and have been taking Esbreit since the middle of 2014. Esbreit has helped me. My eye doctor had to look up Esbreit to see what it was. Now I don’t feel like I am “nuts” when I can’t make out faces at the grocery store and other public places. Thank you for the information.

    • Hi John…no you aren’t “nuts!” I went to the store this morning and couldn’t read the signs that tell you what is in aisle. It’s so good to get your input and experience! Hang in there…

  13. Srini says:

    Thanks for this article on vision blurring in COPD patients.

    I take care of my aged mother who is a COPD patient since 2013. She has started complaining of vision blurring off late. I will discuss this with her Doctor very soon.

    Articles in this forum are very very informative and helpful.

    Thanks to all publishers

    • Hello Srini…what a blessing you are to your mother. I know her illness has changed your life too. I’m so glad you’ll be able to ask her doctor about her changing vision. Print this article, with all the comments to take with you! It was great to read your comment.

  14. Pam Martin says:

    I can totally relate to your findings, I was 51 years when diagnosed with IPF, I have been on steroids on and off for past 7 years, when I was first diagnosed, and on espirit for 5 years, one of first patients in Ireland to try it out,
    I have been on treatment for dry eyes, and have problems with sinus, I attend opticians regular and have noticed how bad my eyes have got, but was putting this down to age rather than IPF, so find this very interesting.
    Thank you for sharing.

    • Hi Pam…I so appreciate you sharing your experiences. It’s so helpful for all of us to hear about. Isn’t it amazing how many patients have commented about problems with their vision. It’s probably not just your age. So glad this column was helpful. Blessings to you in Ireland!

  15. Helen says:

    Kim, thank you so much for this information. It makes so much sense.
    I use systane ultra, I’m going to try your refresh. I have dry eye, cataracts, macular. Whew! And that’s only my eyes!
    Love and blessings to you.

    • Hi Helen…I hope the refresh ointment helps! When you put it in, do it at night before bed. My problem is I like to read in bed as I fall asleep, but the ointment makes my vision blurry (as it helps moisturize my eyes). What I do is go to bed and read, and then when I get up to use the restroom I apply it then and go back to sleep. Just a little hint from my neck of the woods!

  16. Alice Ketchersid says:

    FINALLY!!!! Let me say again– FINALLY!!! I am getting so very tired of doctors asking me why I’m on oxygen. I tell them “IPF, then say Idiopathic Pulmonary Fibrosis”. They blink, nod and go on like I have no disease.
    I have been on oxygen since Feb 2013. Been on OFEV almost that long. For the past year at least, my vision gets very blurry in the evenings and night. I’m on and off prednisone all the time. The eye doctor did find small cataracts, but nothing other than normal quick eye exam. Perhaps I should take this article to him.
    I wish there was a center where ALL the doctors (specialists) knew all about IPF!!!!!

    • Alice, I’m so glad sharing my experience was a help to you. As you can see, we have all been going through problems with our vision, with many eye doctors not having a lot of knowledge about how PF affects vision. Your response makes me so glad I wrote about this. I saw my pulmonologist yesterday and told him of my experience with my eye doctor, and asked for a referral. He said eye doctors are few and far between that have knowledge of PF. He gave me a name, and I will make an appointment. I’ll give an update once I’ve heard more. Yes, I would print this article with all the responses so your doctor can see how common this problem is. I’m really glad you left this comment 🙂

  17. Frances Moore says:

    Thanks for your info. I have IPF and also have dry eyes . Did not know that the two were connected. I use natural tears every morning. I use oxygen at night.

    • Hi Frances…I didn’t realize it either, until I did some research and went to the eye doctor. Seeing everyone’s responses show how common it is. My guess is most doctors don’t realize this. Great to hear from you

  18. Sandy says:

    I have IPF for about 18 months now. Just had basic cataract surgery to both eyes. I had forgotten how vivid colors were! I also have rheumatoid arthritis and take hydroxychloroquine 200 mg two a day. I am warned by my rheumatologist to make sure I tell my eye doctor about taking this medication because it can affect the eyes.

    • Hi Sandy! So good to hear your cataract surgery was successful, and that you are enjoying colors even more. So sorry you are dealing with RA on top of PF. Ugh! Thanks for sharing your experience with all of us.

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