GCA for the Second Time

[Pamk1949]

With my first time with GCA (2017) I tapered to 0 in 4 years. Then, after 1 year of 0 prednisone, I had a relapse . Now it’s 2025 and I’m on my second bout of GCA , this time with Actemra . It’s been over two years now and I’m trying to decide what to do. For the last 8 months, I’ve been on 1.5 mg prednisone and Actemra biweekly. Should I be tapering to 0 pred? My rheumatologist says “do whatever you want” —my neuro ophthalmologist says I need to stay on at one or the other (or both) forever. I feel fine now, it worry about being on Actemra for two years now. I do see a lot of people on this forum that relapse after stopping Actemra with no pred and that’s scary to me. I really feel kind of stuck. Should I just go for it with one or the other? Your opinions and advice would really help.

[PMRpro Ambassador]

I have been on Actemra for PMR for almost 3 years - but I still need 7mg pred and biweekly jabs,

It is a conundrum for you because GCA often lasts more like 4 or 5 years - 2 years is certainly on the short side. I think it is very likely that being at 1.5mg pred is entirely due to also being on Actemra and if you stop the Actemra, you are likely to need more pred but I doubt you would end up going back to the higher doses after this amount of time. You are probably more likely to be able to stop pred having got this low - but even that isn't certain since GCA can have other causes of the inflammation besides IL-6 which is what Actemra controls.

Pre and post launch studies have found that half of patients successfully get off pred altogether by taking Actemra - but when they taper and stop the Actemra as well, about half of them relapse, often in the next year. However, in that case, restarting Actemra quickly gets things under control. The half who weren't able to get off pred entirely are probably more likely to flare without Actemra because that suggests the GCA is still active or they could get off the pred.

Does that make sense? I think first you have to see if you can get to zero pred and then see if you sustain remission on Actemra alone. If you can, then it is worth trying tapering the Actemra to see if you need that. You are in the USA - you can restart either of them if you do need them.

[Pamk1949 in reply to PMRpro]

Thank you PMRpro for taking the time to explain. I know I can get off pred, so maybe I’ll try tapering to 0 with Actemra. I was hoping the GCA wouldn’t take the 4-5 years this time around but I’m guessing there is no answer to that. Your explanation makes a lot of sense.

[PMRpro Ambassador in reply to Pamk1949]

No way of knowing - everyone I know who has had a second dose says the same, every episode is different in pretty much every way.

What you do need to do is taper this last bit very slowly - you have been on pred quite a while and you don't know how good your adrenal status is. The Actemra should allow you to keep on low pred but it doesn't do anything else to get the cortisol factory going again and it takes its time.

[DorsetLady PMRGCAuk volunteer in reply to Pamk1949]

Really don’t know -GCA doesn’t seem to return as often as PMR does -so not a lot of first hand information.

[LemonZest11]

Hi there, I have GCA/LVV and successfully tapered off pred using Actemra. Actemra was a godsend for me, and I continued to take it, pred free, for over 12 months. And then the doc asked me to taper the Actemra 👻. I had been using it successfully at 3 weekly jabs for several years, but the taper to 4 weekly took just 4 rounds to cause a relapse. Perhaps the LVV was always there, lurking in the background, but Actemra held her at bay until it didn’t, at 4 weekly. If you have no side-effects from Actemra (I had neutropenia), I would support a decision to taper the pred, albeit slowly (adrenals), and then see how you go on the Actemra. As PP said, you can go back on either at any time, so nothing ventured, nothing gained.

[Pamk1949]

Thank you for replying Lemonzest11! I too have had low neutrophils, so that’s why I take Actemra twice per month. Actually I have seen some of your posts, and have been encouraged by your tapering pred and Actemra. My rheumatologist doesn’t like the idea of tapering Actemra. But how else will we find out if things are working? And yes, I guess pred and Actemra will always be available to us during this journey. Hope all is well with you now.