GCA & Swollen Eyes

Hello and thanks to everyone for the fantastic help and support on this forum. I wonder whether anyone might shed light on symptoms I'm experiencing, which I assume is connected with GCA / steroid use. I have been diagnosed with GCA since February 2015, and am currently on 20 - 25 mg Prednisolone; my consultant has been trying to reduce below 20 mg, but I keep experiencing intermittent mild temple pain and more alarmingly swollen eyes - they feel half closed a lot of the time, and under pressure, although that again is intermittent. My blood markers are excellent, and have been for a while, which is perplexing to him, given my symptoms. I have had an eye test, which showed only that my eye pressures were at the high end of normal (the optician mentioned that steroids tended to increase eye pressure). I'm not sure whether to increase the Pred or whether that will just exacerbate the symptoms. Thanks for listening and any thoughts?

10 Replies

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  • I've heard people complain about such sensations and swollen eyes but I didn't really have it. I did have dry and itchy eyes though and used a liposomal spray to ease it.

    Did the optician check for dry-eye syndrome? It is quite common in autoimmune disorders and may even develop into Sjogren's, an autoimmune disorder in its own right. Pred can also lead to fluid retention, especially around the eyes which could cause such feelings.

  • Thanks, PMRpro. I should have mentioned that my eyes are very watery - so maybe it's the pred causing fluid retention, as you say. I assume the only way of finding out is by reducing the pred.

  • If you have watery eyes then that is a sign of dry eye syndrome - I know, it doesn't make sense but it is because your eyes aren't producing the thick tears that are so important in protecting the surface of your eyes and so they produce lots of thinner quality tears to try to compensate. Like the difference between ordinary bleach and Domestos (or so they claim!). Ask your doctor to prescribe you artificial tears - although you can buy them OTC anyway - and see if that helps. Long term dry eyes can become damaged so it is a good idea to use something to relieve the symptoms if that is what it is.

  • As an ex ophthalmic nurse I totally agree - it can be tear quality rather than quantity.

  • Thanks Maxine, can you recommend a particular brand of eye drop? Ron

  • You would need to discuss it with the prescriber or pharmacist , but possibly one without preservative. I no longer work as a nurse so wouldn't want to recommend any specific in case my info is out of date. Hope all goes well

  • Added to which - every country is different!

  • Hi - yes i suffered swollen eyes, waterway and blurred (still do actually - currently 12mg pred) actually referred to eye hospital on one occasion and eyes had to be taped open to do the tests because the were so swollen they were almost closed . All normal -put down to steroids. If I have a bad day they seem to swell and water more. I do have GCA but this is apparently unrelated.

  • Thanks, lesley2015, I'll look for the eye drops suggested by PMRpro, but do you use anything special to control it?

  • You really need to talk to an Ophthalmologist - especially re drooping of your eyelids and swelling. It could be any manner of things, allergy to eye drops, a thyroid problem, keep raising it with them until they get to the bottom of it. Did you see an Ophthalmic Consultant in the first place?

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