Yet another update on Swollen Eye

[Fatsiajaponica]

Back at Moorfields Eye Hospital today. It remains a mystery why my right eye has been such a problem. Good news is that it is better, however, eye pressure increased in both eyes now, (29 R and 21L). Face aches (not a joke) and heavy headache in the mornings which improves as the day goes on.

In the absence of any other diagnosis, including GCA, they are left with 'Steroid reaction' whci prompted them to say "we need to get you off these steroids quickly". Oh dear...after a full explanation why that is not possible with PMR, they understood once the consultant was involved. Until the eye issue I was reducing from 20 to 17.5mgs. So, we agreed that should remain in my hands. They gave me some different drops to reduce the pressure and prssure to be reviewed in 3 weeks, full review in 8 weeks.

I did grill them re GCA as they were originally insistent that it wasn't because no 'classic' presentation. Today I insisted that I had a more thorough explanation aside from this i.e. 'what were/are the signs, aside from the lack of classic presentation that it is not GCA.' They were able to give me an explanation which involved subretinal fluid and other features which were not indications of GCA.

My question to the forum is 1) Does the above sound credible 2) Advice re reducing these steroids if they have caused the eye issue. I've only been back down to 20mgs this last week, thinking I could reduce to 17.5mgs as a start then reduce as per DLs slow taper. Thank you in advance

[PMRpro Ambassador]

You may have signs and symptoms of something else - AS WELL. There is no reason why you couldn't also have something on the GCAPMR spectrum,

[Grammy80]

I'm happy that PMRpro responded. I have GCA but everthing I learned about it, I learned on the forum. You sound very intelligent and able to express yourself well...and stand your ground. GCA is just not classic! Not textbook, not predictable and often times normal blood markers...and we have to go by symptoms.

Hope the new meds lower the pressures in your eyes....My best~~I'd go slowly on the reduction until you have satisfying answers and probably even increase if I felt I needed the protection. 💞💞

[Fatsiajaponica in reply to Grammy80]

Thanks Grammy, it is so difficult to trust 'the professionals' when one has learned so much from here and research papers etc.. All we can do is be well informed and confident to challenge. The meds for the eye pressure have worked remarkably quickly in that headaches gone as well as mild eye pain. So, something to be cheerful about!

How are you doing following your recent ordeal? Massive infusions etc..? I'm sure we all need an update ❤️

[Grammy80 in reply to Fatsiajaponica]

I'm so glad the drops took effect as quickly as they did, yes, cheer every step forward.

I'll be 84 this month and these infusions seemed to take more of a 'body toll' than previously, over the past five years I've had them four times...but I can see, I have enough vision to tackle anything. What is clouding me now is taking 60mg each day, somehow by the time the brain fog lessens it is time for supper!!! My brain wants to do things, I'm sure many know that feeling..the brain is cleaning the cupboard, but you don't feel like moving.

I'm thankful I got GCA when I didn't have to go to work or raise a family...in fact, I don't have to do anything. I have a woman who cleans and changes the beds; we aren't rich, but there are just the two of us. I must say, my husband's dementia has made him a calmer person than he was, and he is happy puttering...so it works. I listen to books, go on the forum, and do emails, but I don't get in top gear until later in the day. So, I hope the other things I want to do- writing and painting- will come soon. I don't see the doctors until the 11th and 14th, and maybe, if the swelled nerve continues to go down, I will be able to taper. Truly, I'm in no rush to endanger my eye. So, it could be far worse. I just got an email that one of the gentlemen in my art class at the Senior Center passed away... I'd never have predicted that, so see what I mean.

Just a little added chuckle: When I was in the hospital overnight this month, the nurse came into the ER and exclaimed, "Wow, I've been here 8 years, and you are my first GCA patient. I never heard of it. Wow." August 2024🙄🥴 OK, dear. That is really comforting.

This forum and these wonderful people educated me. I could go on with stories of dumbfounding ignorance....you will do fine, I know it.💞

[Fatsiajaponica in reply to Grammy80]

Oh Grammy, lovely to hear an update. I know that 60mg steroid brain fog but you are right, at times like this we need to know that it is helping us and try not to be too antagonistic towards the pred. Here's to the optic nerve swelling going down ability to feel gratitude..

I have hired a gardener! I'm unconcerned about the state of the house but the deteriorating garden was breaking my heart. He is not too expensive and works so hard and it has boosted my mood and ability to feel gratitude! ❤️

[Grammy80 in reply to Fatsiajaponica]

Terrific...it is so important to DO what gives us pleasure. We Americans plunk stuff in the ground or pots....the English know how to garden~! I just hired a window washer!!💞

[Fatsiajaponica in reply to Grammy80]

🤣❤️