Hi. 75 yr old male from WI USA. Early last fall I had a sudden attack of GCA which resulted in 75% loss of vision in one eye followed by the second eye a bout 10 days later. GCA was diagnosed one day after my second eye went bad. I was put on Pred for a few months and then phased off and now receive monthly tranfusions of Actemra. Damage has been done however but apparently we have avoided total blindness as my vision has stabilized.
.My question for this group is: has anybody been able to find a way to repair some or all damage done to optical nerves? I’ve been told it is highly unlikely that my vision will improve. Help! Is anybody aware of either traditional treatment or not so traditional treatment that might help?
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Dknutson1944
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I’m afraid that once the optic nerve has been damaged by the lack of oxygen- which is what happens when you lose sight with GCA there is very little that can be done. It’s not repairable unfortunately.
I lost sight in my right eye 7 years ago, and over that time there has been no change.
There was a lot of discussion a few weeks ago see link - which did give general advice, but no hope for a remedy - sorry!
That's unfortunate your GCA wasn't diagnosed til loss of vision in the 2nd eye as the 2nd eye likely would have been spared with immediate use of high dose prednisone. see discussion from UIOWA at: healthunlocked.com/pmrgcauk...
I suffered 50% loss of vision in left eye nov 2017 and immediately put on 80mg pred; then had a GCA induced stroke 20 days later and put on a pulse dose of pred: 1,000mg methyl pred for 3 days by infusion. Fortunately the right eye still OK and am down to 5.5mg pred.
I am closely watching my CRP & ESR for any indications of increase from my best values [CRP=0.8mg/L, ESR=6mm/hr] and will increase pred if they start to go up; get these measured monthly. Actemra has been considered but its not clear Actemra alone could prevent further vision loss or possible aortitis [as happened to my sister in MO. I'm in CA, both of us from IA]. There are excellent eye clinics near you treating GCA at Mayo Clinic in Rochester MN and UIOWA in Iowa City IA.
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