Connect
← Return to Are specialists necessary?
Discussion
Comment receiving replies
Yes, I kept my vision. The day I was diagnosed with GCA, I went to the emergency room after losing the vision in my left eye for a few seconds. It was like looking at a blank gray wall. I thought that it might be a stroke. During the next 16 hours after that I lost the vision temporarily about 7 more times. The time got a little longer with each event, with the last one lasting maybe 45 seconds to a minute. What I was seeing in that eye was very strange. Some colors disappeared, and other colors became more prominent. It was a lot like an impressionist painting. I was admitted to the hospital for 3 days so that I could get an IV infusion of high dose methylprednisolone (1000 mg) each day. After that I was on 60 mg prednisone for 6 weeks, and I've been tapering the prednisone and taking weekly Actemra injections since then. I see an ophthalmologist regularly to check the health of my eyes from the GCA and prednisone. So far I haven't had any more problems.
I just googled about blindness from GCA, and it said up to 20% of people with GCA have blindness in one or both eyes. A lot of the outcome depends on seeking treatment in time to save your vision. My understanding is that once you have received high dose prednisone to treat GCA, vision loss after that is very uncommon.
Thanks for your interest.
Replies to "Yes, I kept my vision. The day I was diagnosed with GCA, I went to the..."
I'm glad you didn't lose your vision to GCA.
I had a similar threat of vision loss because of another autoimmune disorder called uveitis. There are varying levels of severity for uveitis. My ophthalmologist said I have an "aggressive" type of uveitis called panuveitis. There is no "cure" for my type of uveitis as is true for most autoimmune conditions.
https://www.mayoclinic.org/diseases-conditions/uveitis/symptoms-causes/syc-20378734
------------------
I've had 30+ flares of uveitis in about 30 years. Every time I reported another flare of uveitis, it was treated like an emergency. Fortunately, I never needed to go to the emergency room. There's a large ophthalmology department at the nearby University Hospital and someone was always on call. I was given a direct number to call for any "suspected" flares of uveitis. I had a couple of after hour flares of uveitis that I reported. It didn't seem to matter ... the question I was asked when I called in to report a flare of uveitis was, " How soon could I get in to be seen." A starting dose of 60 mg of prednisone was my standard treatment for every uveitis flare.
I never asked when I could be seen ... they asked me ... How soon I could get there to be seen! It didn't matter if I was unsure or not. Usually I knew but even when I said "maybe" it was a flare of uveitis they still wanted to see me right away. I still have my vision so I am appreciative of specialists. I even thought my vision was a "lost cause" on several occasions. It was somewhat reassuring when the specialist said "not yet" because there were other things they could try.
Actemra seems to prevent my uveitis flares but the uveitis specialist says Humira is the optimal treatment for uveitis.
https://pmc.ncbi.nlm.nih.gov/articles/PMC8477319/
---------------------
I'm very appreciative of all the specialists who have helped me!
Connect
Thanks for that information. When I first got PMR it was accompanied by "visual migraines" that showed up as rainbow-colored halos around objects.
I'm so glad you sought treatment in time to mitigate blindness!