Well unfortunately I seem to be back to square one. After successfully reducing to 4mgs of pred I reduced to 3 as per my rheumatologist plan and have had eye problems which resulted in a visit to the emergency eye hospital and am now back on 40 mgs!
I didn’t think that eye problems could come back after 2 years on treatment so that’s a shock.
I am awaiting a phone call to let me know how I can get back down again.
It seems like a deadly game of snakes and ladders.
What kind of problems, Golfers1?
Bright zig zag lines at corner of right eye blurring my vision.
Ocular migraine? Opthamologist confirmed that was cause with me, and not GCA playing up.
Why did they plump for GCA and not some other cause?
I have GCA and they would need to prevent any chance of blindness
Of course, but what clinical signs were there that meant it wasn’t something else? Any tests? If you have eye issues in the future are they going to tall you to take 40mg e dry time? It’s tricky to be sure!
Hospital is doing what is expected… they really cannot afford to pussyfoot with a patient with GCA. If it’s proven not to be, you can quickly reduce.
Did you any other symptoms, or have you over the last few days since reducing?
You might think it’s a deadly game of snakes and ladders, but most on here would have advised you to go to A&E and get checked… better safe than sorry.
Yes I agree and had some symptoms of PMR . Bilateral biceps pain and new sharp pain behind ear. I was just surprised that eye problems could come on after two years of treatment.
How could it be proven not to be?
If your GCA is still lurking, and that’s extremely likely at 2 years… and you are on low doses, then the inflammation may well have been building up slowly for some time [even months] without you or anyone else realising it.
Just because you are on steroids doesn’t mean your GCA has gone away , it just means the inflammation caused by the underlying illness is being controlled…. Or maybe not.
Biceps may well be PMR… but that’s how my GCA started, and certainly pain around ear could be GCA…
Further tests which hopefully will be arranged by your Rheumy will give you the answers…and the consultant ophthalmologist did exactly the right thing… as I would expect.
GCA is known to be very prone to flaring in the first 18 months - 2 years isn't much more and the 18 months isn't a sharp cut-off date. GCA can flare up as long as the underlying autoimmune disorder that causes the inflammation is active. The pred does nothing to that part of GCA - it just suppresses the inflammation created.
GCA is never cured, even when it burns out and goes into remission and you get off pred, the predilection for it to flare up or relapse remains for life. To be fair, it doesn't often return, but it can and does.
You sound to be having similar problems to mine. I've had GCA for over eleven years now and am currently on two and a half mgs of pred. My consultant wants me to stay on this dose. The last relapse was dominated by migraines with aura.
GCA patient, with tapering issues after 4 years
GCA symptoms after one year of discontinuing prednisone
GCA symptoms back at two weeks on 60mg. Anyone else?
Has anyone with GCA experienced teeth pain?
