Ok this the second time this has happened and I am not sure why...
The area just above my eyelids on both sides looks like someone filled this area with fluid and it also feels weird. It is not the actual eyelids the area just above it and below eyebrows.
Any ideas or helpful suggestions as to I soak them or what?....
Added a fun photo of a preying mantis trying to look huge. I have never seen phoney eyes on one before. If you look right above the black of its eyes you will see two bulges of green well my eyes look like that but fortunately are not green. I pray the moon face is not coming back.
Lin, I have something like you're talking about. After 22 months and several Flares.....I am, once again tapering down from 60mg. Now at 40. I seem to get stuck here and have problems. I have a moon face....have almost forgotten what I actually look like. Until recently, have never taken VERY close up pictures. Now, doing so as part of my journaling. I can't feel the area you're talking about but can see large areas that look swollen. ( Fluid filled ????) I have so many symptoms and side effects....I hardly know what to take seriously. If I knew how, I would send you photos. Scary thought ! We're all in this together.
I was visiting my twin last month as I had thought my face was ok. But one photo and I was stunned at how skinny her face was next to mine.. we are both large gals but she still has the skinny face. she told me if she gets this she will never take prednisone.
I sure hope you can taper down ok. at 50 I was feeling so icky.. down to 20 where it felt a lot better. right now I am doing the slow method from 17.5 to 16 was gonna try 15 but below 20 is where I flared last time going to fast so decide to take the long ride home..
Hi there - haven't written on this site previously but read it always. I may be able to help. I have had GCA for 20 months. Lost half site in one eye. Have just been to eye clinic as had problems around my eyes. Specialist told me to put hot flannels over my eye lids a few times. Then to rub along under eye lids at bottom and pull forward a bit on top lashes and rub downwards with finger. Apparently the glands secrete an oil which can turn butter-like. The heat softens hardened oil and we can then squash it out. Sounds gross but it worked for me.
Hi Roxey
Thank you so much for the info I shall try it. An old murse here would take a lot to gross me out.
I have chronic dry eye and realize my artificial tears are really outdated. i hope it is not because of the eye drops..
Just a quick note re your comment about artificial tears. I have suffered with chronic dry eyes for - well - seems like forever! At present I am using HYLO-Forte preservative free eye drops. There are about three different ones, mine has red and white box. The beauty of it is - it is preservative free and all in one bottle - not in separate phials like some. It is expensive to buy but I get mine with free prescription which is just as well as I use so much of it. I have never found an eyedrop that takes this horrible problem away (and I have probably tried them all) but this is about the best at the moment. Hope this is helpful.
You might find those grain filled, velvet eye pads that can be warmed in the microwave ease it. The idea of stoking the eyes towards the ducts to allow the fluid to be release also makes sense.
I think your twin might change her mind if she experienced the pain you are in for a day. It goes beyond vanity, however depressing our appearance is. Then of course you are protecting your precious eyesight - top priority.
If that is a recent byline photo, you look good to me.
Puffy eyes beats ones that don't work at all because of GCA!
I was going to suggest it might be blepharitis - problems with the meibomian glands This article seems quite good about summarising the various ways you can go about improving things:
I have the same swelling too. A friend first noticed (as I stay away from mirrors!) and asked about it. Not sure if I can do that 'squeezing' procedure or not 😝, squeamish when it comes to my eyes. Anyone have extreme burning and profuse watering? Was told it was dry eye by optometrist and have been putting drops in but maybe not enough? Actually I think he did say every hour if needed which must admit I haven't been faithful so shall try harder.
Let us know how the eye procedure works, if successful will try to do it .
Someone else on another forum just mentioned drops - are they viscous enough? Once they are washed out by the watering eye they won't be doing much.
I used a liposomal spray - Clarymist at the time was the best but not sure what it is marketed as now. You spray them on the outside of your closed eyelids. Very soothing.
Good point, thank you. My eyes are so painful today and watering, I just cancelled an appointment.....I think I probably should see my opthamologist. I read that article you posted....yikes....mites?!?!....more than 8 in 10 people over 60 are infected with them?!!...what next....his suggestion of warm compresses sounds good though and will start.
Hi Lynn, I can definitely relate! Been tired of hearing from doctors it's the prednisone or blepharitis. Have had it too many times, and noticed it's always when I lower the prednisones and end up with a bad flair. I know exactly what you're talking about. Sometimes it's hard to see because the skin is over your eyelid and closing your eyes. Plus the eyelids are usually watery or wet because of the over hanging skin, the eyelid can't breathe. When this happens I get the Eye piain and usually, the raised arteries headache, signs of flair. I hope this helps you to know that you are not alone. No one knows your body better than yourself!!! But for me it's definitely sign of a flare starting. Just been bumped up from 30 to 40 again my third flair! Started two weeks ago with the puffy eyes and recent bloodwork is bad. Just keep an eye on (no pun intended) other symptoms, hopefully you're not having a flare. 😏
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