Continue Forever on Low Dose Prednisone?

[Pamk1949]

Hello PMR/GCA friends! I had GCA/PMR in 2017, and slowly tapered prednisone over 4 years to 0. Then after almost a full year off of prednisone, in 2021 I had a relapse. Started again on 60 mg prednisone and Actemra injections . Right now I’m taking 1.5 mg prednisone and Actemra every other week. I see a great rheumatologist and a neuro ophthalmologist. My neuro-eye doctor advised today that maybe I should consider staying on the 1.5 forever, because my history. I would love opinions & experiences people on this forum if they’ve considered staying on a low dose forever. I would of course not have the Actemra, because my Genentech funding would expire. Would 1.5 mg protect me from another relapse? PS: This second time around I don’t think I had PMR, just GCA with a temporal biopsy. I know this is a “crystal ball” question, but the eye doctor said if I had a relapse again, it wouldn’t be treated as a flare, but I would be back up to 60 mg again!

[DorsetLady PMRGCAuk volunteer]

Just a couple of observations _

1.5mg is certainly not enough to preserve you from a full blown GCA flare…but neither is it probably necessary to restart at 60mg unless you have sight disturbances … 40mg is considered a sufficient starting dose for GCA with no eye problems.

[Pamk1949 in reply to DorsetLady]

Thank you. You’re right, 1.5 won’t stop anything. And that confuses me. My second GCA just came up out of nowhere. I had no symptoms but temporarily lost vision while doing yoga -bending down. (Amaurosis fugax)Doctors didn’t suspect GCA till days later when jaw problems and markers were slightly raised.

[DorsetLady PMRGCAuk volunteer in reply to Pamk1949]

Yes not sure why he thinks it will.

Sorry to hear you had 2 bouts of GCA ..one is certainly enough. Very lucky to not lose sight second time around.. mine was gone in a few days.. So you definitely don’t want to roll that dice again…

Take care. 🌸

[PMRpro Ambassador]

I have no idea why the eye doctor thinks that. The evidence in the follow-up studies to the giacta trial of Actemra in GCA showed that if there were flares after discontinuing Actemra, they were easily controlled by recommencing Actemra - unless Genentech doesn't help with that. However, after some time of having had GCA it is unlikely you would really need to start again at 60mg but no-one can say for sure.

[Pamk1949]

thank you I didn’t know that —in the trials they used prednisone as well for recommencing right? And I always wondered if my time with GCA would give me a break this time around 😊