I was diagnosed as having PMR with possible GCA in March of 2015. An astute ER doctor in a small town in Minnesota heard my symptoms of two weeks, did blood work and gave me 60 mg of pred and sent me off to my primary physician. That said, I am now at 6 mg, having gone down slowly to as low as 4 mg, but headaches returned. No jaw pain or throbbing in left temple as had been the case, but headaches were enough to have my rheumatologist say back to 6 and see if that settles in. (I have not been tested for GCA as my rheumatologist didn't recommend doing so since I was already being treated with prednisone when I first saw him. So, my question is about vision issues. My ophthamologist asks if I see flashes of light. I do not, but have described something to him that I have experienced three times now - once, years before this diagnosis and now twice in the last few months. Can anyone who has had GCA-related vision problems describe in detail what those symptoms are like?
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I don't know that I can help, as my case of GCA , I think was unusual in that I didn't have any visual disturbances that many describe. But I felt I should reply, if only to confirm that not everybody gets the same symptoms.
I had a very late diagnosis of GCA, after suffering the usual jaw pain, tender scalp, headaches which felt like a steel band around head. No enlarged temporal artery or specific pain to arteries.
The only visual disturbance I had was blurring of my right eye, starting at the bottom one evening, and over the next 4 days travelling up to cover the whole of my eye. Despite seeing (excuse the pun) my GP 2nd day in, who couldn't see anything wrong and didn't connect with the other symptoms, I eventually went to A&E once eye was completely blurred to have GCA diagnosed. Unfortunately by that time, the optic nerve had been irreparably damaged.
Hopefully others that have different stories will tell them, but please keep on top of your headaches, don't let the situation get any worse. Although sight loss once you are on Pred is very unlikely, you do still need to be aware - as you obviously are.
Yes, doctor was most concerned about headaches as I normally do not have them. Going back up to six has helped in that regard, so there I will stay there for a few months. Eye doctor reported that his GCA patient who lost vision had her jaw pain diagnosed by her dentist as TMJ and it went on for a long time before she suddenly lost her vision. So grateful for early diagnosis from an unlikely place. I feel I was lucky. Thanks!
Unfortunately many of the symptoms of both PMR and GCA are similar to other illnesses/complaints, and as both are comparatively rare (in relation to more common illnesses) the medical profession doesn't automatically consider them initially.
I think things are improving in the UK since my symptoms started 6 years ago, but they still aren't one of the 1st illnesses most doctors go for! Which is why some still slip through the net.
One lady described the sort of pattern you get on the TV when it isn't tuned in. In my experience I don't remember anyone mentioning flashes of light with GCA, those who have had that had vitreous detachment.
This a description from one lady that I saved on another forum as I found it so interesting:
"I started exhibiting pain in the temple area first which I attributed to glasses and a new set of hearing aides. If you wear glasses it would be the temple area right above the bar which runs from lens to the ear. There was noticeable swelling and tenderness in an area about two inches in diameter. After about a week, it felt as if there were very small bird shot pellets under the skin. in about two more weeks I lost vision in my right eye. When this happened my field vision, in the right eye, went totally white. After about two minutes, little red, green and blue dots and slashes started flashing on the white "screen". Then the field of vision widened and it appeared to me as if the white field started looking like a snow flake and I could see again in areas that were not covered by the flake. Fuzzy vision took about ten minutes to return and after twenty minutes my vision was normal, 20/25 with astigmatism. The headaches that accompanied the GCA ran from temple-to-temple across the forehead."
The common descriptions are blurriness and double vision, especially in the morning or after waking from a nap; a feeling as if there is a blind or a curtain over one eye; any loss of vision, partial or total, however fleeting. The medical term is amaurosis fugax:
"Amaurosis fugax and a visual TIA are similar in several respects: Both are of sudden onset, last 2-30 minutes, and resolve quickly without pain. Amaurosis fugax typically consists of a gray curtain that progresses from the periphery and moves toward the center of vision."
But there really are a lot of different ways it may present - and in some patients there is no warning at all.
What I have experienced is a kind of bright white oval with sharp jagged edges rather like a conversation bubble in a cartoon and a center that looks like a gel or fluid. While it is present for about 2 minutes, I can't see out of that eye. It clears and then all is normal. It has been the same all three times it has occurred.
It is so helpful to know how any of these visual changes have played out in those who have had them as the doctors can only report what they have been told and my opthalmologist has only had one GCA patient who lost vision and could not comment on my description.
Thanks for the detail from the other forum. That is very helpful.
I have been diagnosed with GCA (5 years ago, PMR 16 years ago|) and have had similar symptoms to yours except that mine have not obscured vision totally, simply sit in the corner of the eye for 20+ minutes, and gradually fade. Opthamologist's opinion was that there was nothing to worry about but if they persisted and became more frequent I should see a consultant.
My experience was , as described by PMR Pro....a shade starting at the edge of my right eye and moving toward the center..like a sheer curtain was being drawn. A retina specialist can do a test to see if your optic nerve is leaking ...just moving up to 6 mg of prednisone would not be enough I wouldn't think and loss of vision is too important to fool with.
My pmr returned for the third time in March. My doc gave me a steroid shot that had cleared up the past two episodes. I was out of town when my vision blurred and I happened to be near my old optometrist. he immediately put me on 60 mg of prednisone and saved my eyes. Later I had symptoms of torn retina or retina problems and I'm still seeing my retina doc. A strange thing happened that I wish someone could tell me about: A large image suddenly showed up that I could see with both eyes. It looked like a jagged Indian headdress in gorgeous colors, It lasted about five minutes and went away. Since then with four doctors working on me my prm and gca are gone. I've cut down to 8 mg prednisone and am reducing by one mg a month. Would you believe I got another rare disease, MdDs. I got it after debarking from a cruise and it is worse than the first two as it is unmanageable and incurable. It has been for me a year from you know where.
Minecreek, if you look up images of the kind of aura migraine sufferers get you may recognize your "indian headdress" vision. I have often experienced classic migraine auras, and in my case it starts as a sort of breaking up of my central vision, like op art, and I can't, for example, read for a few minutes. The spot grows, becomes a c-shape of moving jagged shapes while drifting out of my centre of vision to the side, and then out of sight. One time I happened to experience this in the dark and the image was definitely all lit up, sharp white jagged lines against total blackness. I think your multi-coloured ones sound more interesting. I think this is something I'm "seeing" with both eyes, and assume it's because it's really something happening in the brain.
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