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Still frustrated about blurry vision from GCA
I am frustrated that no vision test or specialist can confirm my blurry vision from GCA. I’ve been to an ophthalmologist, vascular neurologist, and as of today a neuro-ophthalmologist.
Don’t get me wrong, I’m happy no test is showing a problem with my vision, but also frustrated there is no still no definitive confirmation or explanation for my blurry eyes, except that it could be from GCA (even that isn’t a definitive diagnosis, just a suspected one because I had a negative biopsy, which could still mean you have it). Rheumatologist also suspects PMR and really hasn’t ruled out other autoimmune diseases, but focus are GCA and PMR right now.
I had high hopes/expectations that the neuro-ophthalmologist would have answers today. After he was ready to send me off because he found nothing wrong, I pressed for what he thought about my blurry eyes, he suggested trying dry eye drops or maybe checking if I need new prescription eye glasses.
After I left the doctor I realized he checked my vision and my glasses (and so did ophthalmologist), wouldn’t they know and tell me if I needed a new prescription?! And between the ophthalmologist and neuro ophthalmologist, if I had dry eyes, wouldn’t they know and tell me?
I took it upon myself to start using drops for dry eye a while ago because I heard it couldn’t hurt, haven’t seen improvement, but maybe I need to use them more regularly.
My eyes have been blurry since I started this autoimmune disease journey in October 2024. They have been worse the last few days (recently down to 20mgs prednisone). I was actually happy I was going to neuro ophthalmologist when my eyes were blurry today, hoping he would see or find something.
I feel the need to get to the bottom of it, but is it pointless? Should I just accept there is no rhyme or reason behind it? What if there is some other autoimmune disease or a completely different diagnosis that could explain it or that there is a different treatment for that is not being considered? Any suggestions? Anyone relate?
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I can relate but no answers as well. I have had PMR and not GCA. My vision at times has been very blurry. Almost a gloss over my eyes. I can be reading and have the words completely gloss over. I have been off prednisone for 2.5 years. My thought it was a prednisone related issue. My eye exams have shown no issues. Thinking now it might be something else. High Cholesterol? High blood pressure? Or maybe one of the medications to treat either of the two. Age related? Mine comes and goes. IDK..
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2 ReactionsI’m sorry you are going through this also, but it helps to know I’m not alone.
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1 ReactionI have same issues. Waiting for appointment with rheumatologist, really hard to find one accepting new patients. Just wanted to let you know that you are not alone
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1 ReactionThank you for letting me know I’m not alone. Good luck finding a rheumatologist.
I read your story and wanted to share my health experience with you. I too suffer from “Dry Eye” and use Ivizia eye drops, which are over the counter. They are preservative free. I also suffer from Hashimoto’s and Hypothyroidism which is an autoimmune disease. I take 56 mcg of Synthroid to regulate the Hypothyroidism. Most recently, I went from taking 100 mcg to this lower 56 mcg dose. I have noticed that my eyes are more blurry and feel dry. Even though I’ve been using the above mentioned drops. It could be that it’s winter and more dry in our home or the bitter cold weather we’ve been having (live in Chicago area), but I have noticed this too. Do you take any supplements? You may be lacking in a particular vitamin, I don’t know, but listen to your body and find a doctor who will help you, not just put a band aide on it! Good luck!
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1 ReactionI was diagnosed with GCA in early September when I started losing the vision in my right eye. Fortunately, IV steroids stopped the progression and my vision was restored. At the time, my eyes checked out fine. I had all the other symptoms of GCA and it was diagnosed with a temporal biopsy. Since then, my eyes get blurry and I have to blink really hard to clear my vision. I went back to the ophthalmologist and again, my eyes checked out fine, and she said I didn’t have dry eyes. I don’t know what to think. I have been attributing it to the prednisone. I started out at 60 mg in September and am now down to 15 mg.
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1 ReactionThank you for sharing your experience. I take a multivitamin daily, but I’ll talk to doctor about other supplements to add. I agree the cold weather and dryness in home helping, I’m in NY. My regular GP, who is great and who I think would be very helpful with everything I’m going through right now, has been on maternity leave. I have an appointment with her as soon as she returns in March. I’m also due to make an appointment with my GYN, who is also great at listening and helping. I’ve been so focused on all the specialists I’ve needed to see lately, but I’ll make a GYN a priority. Good luck to you too!
It must have been very scary to start losing your vision in your right eye, thank goodness the IV steroids stopped the progression and your vision was restored. My rheumatologist mentioned that prednisone could also affect vision so while my blurry vision may have started with GCA it could now be because of prednisone. Thank you for sharing.
I have had a similar experience with my eyes after going on Prednisone. I was diagnosed with PMR in early Oct 2024 and put on 15 mg of Prednisone. After a couple of weeks, I tapered down to 10 mg. Some of my symptoms were relieved but my neck, head and scalp pain did not abate. I was then diagnosed with GCA in late November by a positive vascular ultrasound and put on 60 mg of Prednisone for two weeks. I am currently down to 30 mg and going on Tyenne later this week.
I noticed that my eyes were not right in early November after about a month on Prednisone. They have gotten a lot worse since then and neither my regular glasses nor reading glasses are as effective as they were in October. I have blurry vision near and far even with my glasses. Of all the side effects I have experienced from Prednisone, this is the most frustrating. I appreciate not having the pain, however, and having the CGA addressed before that led to permanent vision problems.
I mentioned this to my rheumatologist PA and she feels that the blurry vision might be due to the increased blood sugar as a result of the Prednisone. She described it as looking through a glass of sugar water which is how I would describe it. She felt it would decrease as I go down in Prednisone dosage. After this, I searched on-line and found a couple of articles that talked about the fluid retention and increased intraocular pressure from Prednisone, both of which can lead to blurred vision. I have an appointment with my rheumatologist and another with my optometrist in two weeks and will be discussing this issue with them. I will also have my eyes checked for glaucoma and cataracts since those can be side effects of Prednisone.