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Are specialists necessary?

Polymyalgia Rheumatica (PMR) | Last Active: 4 days ago | Replies (27)

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@kereno

Were you able to regain your vision? I am so glad you had the help available when you needed it! And that you have established a trusting relationship with your medical team. That's really a blessing.
I wonder if blindness is an outcome for everyone who has GCA? And if so, how they are dealing with it? That's another thread, but I am interested in hearing more about your experience.

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Replies to "Were you able to regain your vision? I am so glad you had the help available..."

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.