The Double Vision Issue with GCA

[montebello]

Hi all,

I'm a GCA patient, having been diagnosed in AUG 2022. I started on 60 MG PRED, and after 9 months have titrated down to 12.5MG. I am under the care of a GP, ophthalmologist, and rheumatologist.

PRIOR to being diagnosed with GCA, somewhere around MARCH 2022, I started noticing I had double vision but only when I tilted my head (not turned my head but tilted it). Since I had no other symptoms back then, I thought it was related to the glasses that I wear. I went to the eye doctors, they examined me, added some prisms to my glasses, etc. It seemed to have helped a little, but did NOT totally correct the problem. I should have pursued it but I didn't.

Then, in AUG 2022 I started getting bad headaches, jaw weakness, loss of weight, etc. I had the temporal artery biopsy done and it was positive. I was placed on 60 MG PRED immediately. I think I was on 60 MG for a month before decreasing to 55 MG for another month, etc.

The main point I want to make about MY double vision is that it never went away, even after being on 60 MG. My ophthalmologist, as well as all the research I have done on this issue tell me that if the double vision does not go away within the first few days, it's likely permanent. Apparently, this is because blood flow had been lost to the nerve which activate the muscles that control eye movement -- and once blood flow is lost to a nerve then the nerve usually dies -- and that's that.

If the blood flow had been lost to the muscle itself, then upon reestablishment of blood flow the muscle would likely have sprung back into action. But if the nerve itself was affected, most of the time it dies.

If this is what actually happened to me than I am very fortunate indeed, in that it could have been blood flow to the optic nerve that was disrupted and then I would have been blinded.

According to my ophthalmologist, another explanation is that my double vision is aged-related and has nothing whatsoever to do with my GCA.

I'm sharing this in case others are plagued with this double vision issue. MOST CERTAINLY, if you experience sudden double vision then GET IT CHECKED OUT FAST. But if it does not go away, it does not necessarily mean you have go be on high doses of prednisone again.

[SheffieldJane]

Oh montebello! Thank you for sharing this with us. I am sorry that it happened to you.

[montebello in reply to SheffieldJane]

You are very kind.

[bruce1951vet]

I feel for you Brother! Thanks so much for sharing!

[montebello]

Thank you Bruce. All the best to you

[GML19]

I had episodes of double vision several times but only after I had been diagnosed with GCA. It only lasted for approximately 10 minutes when I was already on steroids and my dose was immediately increased. I am so sorry that you still have double vision. I remembered feeling very frightened. Good luck on your GCA journey. I send you all my best wishes.

[montebello in reply to GML19]

You are very kind. Thank you, and best to you as well.

[Tj2017]

Thanks for your post. One of my earlier symptoms of GCA was double vision. I have always had good vision and I thought it was blurry vision until I saw 2 golf balls instead of 1. My double vision and other GCA symptom got better after Actemra. However, my double vision did not go away. I also had an ophthalmologist suggest it was not related to GCA which was wrong as it did get better. I unfortunately am having a flare up of GCA and my double vision is back…not quite as bad yet.

Thanks for sharing.