A couple of GCA questions

[PuttyPenguin]

Hello!

A couple of GCA question:

Has anyone with GCA, and reducing Pred, experienced double vision again without a sore jaw and scalp? And was this confirmed as a flare-up?

I have both PMR and GCA and recently began to experience flu-like symptoms and stiffness of PMR. I had a blood test and the ESR was on the way up. So I increased my steroids by 1mg, then 2 mg and finally 2.5mg and the pain was gone. However, I then got double-vision.

Off to eye casualty.

The doctors couldn’t find anything wrong with my eye so the conclusion was that it was a GCA flare-up. My rheumatologist was called and agreed, increased the steroid to 40mg.

I think I then muddied the waters.

When I first diagnosed with GCA I was given a higher dose of Pred and my sight was pretty much restored within a few days. This time, four days later, when the vision didn’t seem to improve, I called the rheumatology helpline as I wondered whether I should increase the Pred but was told to go back to the eye casualty. Different doctor. More tests. Conclusion was nothing wrong with the eye but they didn’t think it was GCA because I didn’t have any other symptoms such as a sore scalp or jaw. They are now thinking of sending me off to vascular and neurology.

On my second visit to casualty, the eye doctor did say that if it was GCA it would take 4 -6 weeks before the eye calmed down which was something I didn’t know - as I wasn’t told - when I had visited four days previously.

It’s now been six days and I feel my sight is now improving a bit. This leads me back to my original questions: Has anyone with GCA, and reducing Pred, experienced double vision without a sore jaw and scalp? And was this confirmed as a flare up?

Thanks for your time.

[PMRpro Ambassador]

Just as with the original presentation, a relapse doesn't have to have all the listed possible side effects. Many doctors appear to think ALL patients have ALL symptoms - which is far from the truth.

[PuttyPenguin in reply to PMRpro]

Many thanks for your advice

[cycli]

yes Photojournalist. I had that but didn't change my dose. It took some weeks to settle. It's not the eye but the brains ability to process the data and rationalise the image from each eye into a coherent image. I still have a residual image split if I strain vision sideways but normal speedy assimilation of both eyes has come back. I too had my eyes thoroughly tested and they offered a prism attachment to spectacles which can collate the view if the recovery doesn't happen.

[PuttyPenguin in reply to cycli]

Many thanks cycli, I hope you're doing well with your recovery

[cycli in reply to PuttyPenguin]

ongoing photo. I'm stable if not much improved. Try not to worry about double vision as it will settle. Can't give you a reason why it's happening to you but it is worrying. but I think you will find it settles. Don't drive like that though as you need good vision focus and two images don't help.

[PuttyPenguin in reply to cycli]

Lol. And as for all these twins...

[cycli in reply to PuttyPenguin]

play spot the differences

[Sophiestree]

That must have been worrying for you. I have LVV and never had any scalp or jaw issues, mainly severe headaches and neck pain.I'm pleased to hear it is improving somewhat.

What I have is floaters, that cover the centre of my eye, so life is a constant blur!

And I don't think it is going to get any better any time soon.

[PuttyPenguin in reply to Sophiestree]

Thanks Sophiestree. it is very distressing, isn't it!

[Carriemetz]

Hi - I never had double vision again (or the jaw claudication, though that took a week to clear, whereas the double vision went after two or three days of 60 pred. ) However I did - and do - even after three years coming slowly off pred have many floaters and when I first wake from a doze, rather ‘shimmery’ vision. It always clears after a blink or two, but I still have an instant’s suspense about it! Rheumatology still keep a six month eye on me because of it though I am off prednisolone so you were quite right to take it seriously and if it doesn't ‘settle down’ - in less than 6 weeks perhaps! - keep going back. Better safe than sorry. Good luck, hope it’s a passing blip rather than a big flare.