GCA dither

[Ryeland]

Thank you to those who replied to my GCA dither posting from yesterday but I think, in the interests of avoiding a lengthy narrative, I misrepresented both the GP and the Rheumy and did not give them due credit. GP was less certain about the way forward but did make an urgent referral to rheumatology who obviously got back to the GP quite quickly, recommending in effect, an immediate increase to 40 mg pred. with an appointment with him for 4 weeks ahead. This was relayed through to me on a less than perfect phone line.

My dither was around upping the Pred to such an extent, from 7 to 40 mg, and then having to face the journey back down again, all it seems on the basis of not very hard diagnostic criteria. But, there isn't a dipstick is there? I will ask about scans or anything else when I see the rheumy.

After a dreadful night of dither, I have decided to go for the increased Pred, which is preferable to possible loss of vision! Just waiting for the prescription to go through now. Thank you everyone for your ongoing support. To have this forum as as a sounding board is out of this world valuable.

[DorsetLady PMRGCAuk volunteer]

Right decision from you -as we always say better safe than sorry….

Sure you’ll keep us updated…

[Ryeland in reply to DorsetLady]

Thank you. Of course I'll keep you updated.

[piglette]

It is always difficult to take the bull by the horns and increase. If it works it will be worth it, if it does not work you can reduce pretty quickly anyway.

[PMRpro Ambassador]

If it isn't GCA you will be able to taper the dose fairly quickly. If it is GCA - you have reduced the risk of losing your sight.

[SheffieldJane]

sound decision!

[montebello]

I'm in the same boat as you. I was at 20 mg PRED, and because of slightly elevated inflammatory markers and some jaw pain I was asked to go back to 50 mg for 4 weeks, then 40 mg for another 4 weeks, etc.

I still don't know if it was necessary to go to that extreme. I struggle mightily with fatigue and vision issues even at these doses, but since fatigue and vision issues are also a side effect of PRED, who knows what to do.

Frustrating disease, this GCA. I guess we're all doing the best we can, including the docs

[PMRpro Ambassador in reply to montebello]

We would say that that was OTT. If you had been fine before then adding 10mg would probably have been plenty and at worst 40mg would have done. But someone was sticking to the letter of the law with jaw pain being a red flag for GCA.