Vision problem

Can someone tell me the kind of vision problems you get with GCA? I know you get them but can't find out what form they take.

I have had PMR for 18 months and as yet no GCA but did have some strange visual effects the other day and would like some reassurance. I suddenly couldn't see properly because it felt as though my eyes just weren't working together. I think the vision in each was clear but it was a swirly mess as though things were moving around. It made me feel quite sick but went off after a few minutes.

I'm not inclined to think it was GCA related and I have no other symptoms but would be very grateful if you lovely people could tell me what the visual effects of GCA are like.

12 Replies

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  • They are different for everyone so it is very difficult to say. In the literature they mention dark areas, complete or partial loss of image, a feeling as if a curtain is across your vision, blurred or double vision especially after waking in the morning or after a nap.

    GCA tends to make you feel unwell too and there are other symptoms such as jaw pain when chewing that goes when you stop, scalp pain, headache. But not everyone will experience all of them - and very occasionally they may have none in advance.

    If that is all you have at present probably a good way to proceed would be to see your optician (one with all the equipment to examine your eye, not just dispense glasses) and get them to examine the back of your eye to see if there is any sign of poor blood supply to the optic nerve. They can see far more than your GP can. If, on the other hand, you have any of the other signs or symptoms a discussion with your GP would be a good idea, possibly even asking for an urgent appointment with your rheumatologist.

    And if you have any real loss of vision then go to A&E immediately - if you have an eye hospital within easy reach go there. Yorkshire Ambulance Service teach their paramedics to take patients with visual loss to A&E because of the risk of GCA - visual loss is not just a sign of GCA, it can be a sign of stroke or mini-stroke which is always a medical emergency.

  • Thank you PMRpro for your helpful information. I will get my eyes checked.

  • Hi Mary,

    As PMRpro says all sorts of eye problems can be caused by illnesses other than GCA, including a side effect of Pred!

    As you have been on Pred for 18months and have no other symptoms it is unlikely to be GCA, but you can never be sure - so as already advised get them checked.

    From my personal experience, which I always say is an extreme case, but not that rare unfortunately - I'm not sure whether I had PMR (undiagnosed) for over a year before I started with GCA, or whether I had GCA from the start. But I did eventually get all the recognised (well unfortunately not by my GP!) head problems - tender scalp, jaw claudication etc before my eye was affected.

    My right eye started being blurred from the bottom one evening, next day same, following day the blurriness had moved up the eye, could only see through top third (saw Dr, thought it not connected to other symptoms and sent me home and told to make optician appt!). Before I got to optician, the blurriness had covered the complete eye, so I went to A&E instead - GCA diagnosed, sight irretrievably lost.

    Because the blood does not get to the optic nerve, and therefore no message to brain, the effect is slightly weird - it's not like when you shut your eye and everything is dark. The light still gets into your eye, so it is like looking through a very thick net curtain, you cannot see anything but there is still a sense of light there. Ironically although the blurriness started at the bottom of my eye, I do have a little sight in the bottom right of my eye, not enough to define anything, but just a blurred outline if I hold something about six inches from my face!

    Sorry to waffle on, but it's difficult to explain in a few words!

    As I said, think you are ok, but best get things checked. Wish I'd found this site on the beginning of my journey, maybe things would have been different! But it is what it is.

  • Thank you DorsetLady. That's very helpful. I don't know where I'd be without the support of this forum.

  • I had "non standard" visual disturbance, which manifested as scintillating scotoma, which is normally caused by migraine. It's worth googling the above to see if this is what you mean, as there is a great video which exactly mimics the visual effect. I was told later by ophthalmology that this was probably because the blood vessels affected by the gca were supplying an area of the brain as well as the optic nerve. Fortunately I had enough other symptoms for a different GP to recognise that it was not "just migraine" and send me to the urgent eye clinic in time for my sight to be saved.

  • I saw rainbows around lights with my Left eye. After 4 days the pupil was fixed and dilated. Dr thought glaucoma. I also felt like a curtain of cobweb was over that eye. Saw opthomologist the next day. I swear he saved my sight with massive doses of prednisone. 2 weeks later L temporal artery biopsied. Of course by then showed negative. Apparently now need r side biopsy. Not much point, though now getting tingly scalp and aching eyes. Still on 40 mgm pred daily. To see a rheumatologist in 2 weeks. I have a wonderful GP. I am 68 yr old woman and live in New Zealand.

  • Thanks Erolyn. Good luck with everything and thanks for your help.

  • Thank you. I'll check that out.

  • Thanks Mary. I will miss my steroid high when I give up the prednisone. Haven't had this much energy in years, positively manic without the lows!

  • I had what I call inkspots over 1/3 of vision one day, 2/3 next day, then total loss third day. Went to Eye Hosp. Too late to save sight in that eye, but massive infusions of pred on admission saved the other. Don't delay if you have any loss is my message! Good luck. Raymck

  • I have had PMR for about 3 years and GCA about 6 months. I just had the headaches and jaw pain but yesterday I saw an ophthalmologist and asked that very question. He said most times there would be no warning, just nothing or areas of nothing. He said any time I felt something just wasn't right to go right to emerg. Good luck!

  • P.s. You should have your eyes and especially the optic nerve looked at. Good luck!

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