GCA steady

[Triumph650]

After being diagnosed with GCA due to partial sight loss in right eye I started on 50 mg prednisone. Seven days later back to ophthalmologist to check swelling of optic nerve. It has reduced slightly and now on 30 mg for next month.

I am so grateful to my optometrist and her expertise in picking up my problem early and having some pull with ophthalmologist for urgent appointment. Sometimes living in small town with good services can be valuable.

Next time I go to specialist I will ask for scans to show everyone these are truly amazing MRI images of optic nerve.

[PMRpro Ambassador]

You were indeed lucky it was caught so quickly. However - that is a very big drop at a very early stage for GCA where there is already visual loss so I hope she will be checking you very frequently to be sure it is still enough to control the inflammation.

[Triumph650 in reply to PMRpro]

I have to go with ophthalmologist’s advice on management of doses I guess, they are the specialists. Having swelling of optic nerve where it leaves the eye and goes to brain is a serious worry I can assure you. I don’t take it lightly.I have zero faith in Rheumatologist I went to see and will not be going back.

[PMRpro Ambassador in reply to Triumph650]

That's fair enough - but like DL I'd have thought a bit longer at the 50mg would have been a good idea. I know they are scared of too much steroid but this is eyes we're talking about!

[DorsetLady PMRGCAuk volunteer]

Very lucky - so what's the situation with eye now...still partially sighted or improved?

Think I would have suggested you stayed at higher dose a bit longer, and didyou drop from 50mg to 30mg in one go, or a bit slower?

[Triumph650 in reply to DorsetLady]

Straight from 50 to 30mgSight still blurred in lower half of right eye, like glasses are fogged, maybe ever so slight improvement and according to specialist scans of optic nerve the swelling is slightly down.

[DorsetLady PMRGCAuk volunteer in reply to Triumph650]

From my experience (complete sight loss in right eye)? -think you needed longer at 50mg to endure swelling reduced… I know mine was lot worse, but still took 2 weeks at 80mg before ophthalmologist was happy to reduce -and then to 60mg for another 7-8 weeks.

The fact that you still have blurring in bottom of eye indicates to me that higher dose required - or that’s as good as it’s going to get.

Best of luck

[SnazzyD]

Fantastic about the rapid response. I am also a bit concerned though. The ophthalmologist is an expert in eyes but not larger vessel vasculitis that could be very much present. Others who have been treated by ophthalmologists did seem to be on higher doses for longer than this too. I started on 60mg and was then on 40mg for 6 weeks. Be vigilant.

[jinasc]

That is a huge drop from 50mg to 30mg . I went down by no more than 10% at a time at each drop (those were the days before tapering plans). It took me quite a while to get to 20mg and then the first flare.

I can only echo what PMRpro and Dorset Lady and SnazzyD have already said. Much too fast a drop, particularly when your eye is still fuzzy.

Your eyesight is precious and once it goes it goes, so you do need to have a good talk to your medic.