The cost of my GCA flare...I didn't recognize it ... - PMRGCAuk

PMRGCAuk

21,219 membersβ€’40,234 posts

The cost of my GCA flare...I didn't recognize it soon enough~

Grammy80 profile image
Grammy80
β€’9 Replies

I share this in hopes that it helps someone.....

I had shared a few days ago I had a flare. When I talked to my rheumy on the 9th of April, he said he wanted me to go and see my ophthalmologist as soon as she could see me. I called her last Thursday and had a two-hour visit and testing today...my only eye did suffer some damage from this flare. The lack of clarity and sharpness I have now is permanent even with my glasses...the new normal.

I'm VERY lucky and have much to be thankful for and little to be sad about, but here is my caution....my vision changed, I noticed it and just figured it was due to the changes in my meds. I should have called my rheumatologist but I just kept trying different glasses. As it continued for two weeks, I still never thought it was the GCA and didn't talk to the doctor until it hurt to chew...and I thought...wow? Could this be GCA again?

When you first swallow the pill, it is bitter. I know myself and I'll be fine. So if you have issues with your vision, don't do what I did. Be quicker~~

Again, my thanks to the forum...I just love you all for being here.

xo

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Grammy80
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9 Replies
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SheffieldJane profile image
SheffieldJane

I am sorry that this has happened to you and admire your positivity so much. Thank you for the warning. This could happen to any one of us. Sending love and hugs. In a time of rationed health care, we must learn to be more demanding. These are serious conditions.

Grammy80 profile image
Grammy80β€’ in reply toSheffieldJane

So true Jane...you and others in the forum have been such a source of inspiration to me. I just got lulled into 'this too shall pass' and consequences never occurred to me...I'm still lucky. Who knows ~ I may turn into an impressionistic artist out of necessity. ;) Then again..I may use that for an excuse for failed realism... ;) xo

I do hope it helps someone...it sure made me more alert.

Oh Grammy. πŸ’œπŸ˜˜πŸ˜˜

Grammy80 profile image
Grammy80β€’ in reply to

xo sniff, I have no emojis...thanks Pooper!!

herdysheep profile image
herdysheep

Good advice. So sorry you had this experience. I guess many of us wait and see when there are changes. It is not easy to know when to do something about it, especially in these times. Many thanks for the heads up.

bunnymom profile image
bunnymom

I am so sorry. These conditions can make it hard for us to know what to do next. So baffling. Wishing you well today ❀️

Grammy80 profile image
Grammy80β€’ in reply tobunnymom

Thank you...I'd felt so good for quite a while that when my vision 'got fuzzy' it never occurred to me that it was a flare-up...just thought it was steroid change and I'd get new glasses when it straightened out. Should have, could have, would have ...that does no good but maybe it will help someone else. xo

Rimmy profile image
Rimmy

I am so sorry to hear this happened to you Grammy80 and many of us here with GCA will really appreciate you sharing this invaluable 'warning' not to in any way downplay any new or returning symptoms - especially if we think the doctors may be extra 'busy'. As you say it is important to pay close attention and if necessary seek emergency treatment if we even suspect it may be necessary. Thanks again !!

Grammy80 profile image
Grammy80β€’ in reply toRimmy

My joy Rimmy, I was so busy feeling good, I failed to attribute those symptoms to GCA. I'll do whatever is in my power to keep things the way they are! I'm thankful it helps. ;)

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