Reluctantly returning to GCA

[GCAfiveyearrelapse]

Hi all : I am 60 and two weeks ago experienced transient vision loss in my right eye. Episodes of 2-3 minutes of blindness in that eye happened 8-9 times, continued into next day and off to the hospital we went.

I have a GCA history at age 55 which resulted in a nearly 2 year taper from 60/70 and down to zero with several unaffected years. It felt truly in remission.

But two weeks ago, virtually no warning, my vision starts to cut out. The advice from neuro opthamologist is to get to the hospital right away. I do, am admitted, they start testing for stroke and blood flow throw many of the large and medium vessels.

My send rate is tiny. And C - reactive same tiny low number. No scalp issues no aches. No fever body ache. Nothing at all except the eye flutter.

3 mri’s later everything bears out what looks like “occult GCA” it seemed to manifest in the right eye alone. When hit with the good prednisone avail in IVs they do the job stayed to days then left with taking 80 , 70 then 60 which is where I am now,

Questions! And thanks in advance I will take time with you if any thing helps!

- this occult GCA version seems to operate in a way that might make it hard to keep my self safe when all I have is a fluttering eye btw me and blindness .

-other than the eyesight, I didn’t present with unhealthy symptoms. blood work was normal scans head neck carotid normal.

-is anyone familiar with parameters I might encounter? Does my history suggest an early retirement to find places I want to see..? Followed by later years in which I might apply my other senses?

-really interested in how this occult version of the GCA tend to behave

Ps leading consensus with me family and care team five years ago was that this GCA diagnosis was caused by over extensive use of antihistamines and cold suppressants during a bout of trouble there cough syrup too, decongestants

Cheers and thanks for sharing !

[Bcol]

Good morning. I can't help you with your Occult GCA as it is something I have no experience of, but I'm sure there will be many others along later, still early here, who will have much to offer. It may be worth having a look/search through the FAQ's for information and other experiences. Best wishes and I hope things get sorted out for you.

[SheffieldJane]

I have posted an article on a separate post that is interesting on the diagnosis and treatment of occult GCA. The outlook for saving sight seems to be good if caught and treated with high dose corticoids in time. Best wishes. The low dose for life recommended by Professor Dasgupta is recommended here too.

[PMRpro Ambassador]

There is a fair bit of literature from a guy called Hayreh whose "thing" was occult GCA.

It does underline that documented previous history is crucial when you go to A&E and that a VERY low threshold is required for any episodes of amaurosis fugax (transient loss of vision) to be reported to A&E. It can also be a TIA and signalling risk of a stroke as another concerning add-on.

Relapse of GCA is unusual - but we know it happens. Apparently some doctors don't however - someone was told only recently that "GCA is monphasic" and it won't recur. If only.

All the best.

[SnazzyD]

So sorry you’re back again. I hope things are stabilised. One question though - did they explain the mechanism by which the antihistamines etc caused it?

[GCAfiveyearrelapse in reply to SnazzyD]

No - they seem so in the dark. It’s a hunch the rheumatologist had because my two episodes correlated with heavy antihistamine use.