GCA Relapse —Is +5 Pred Enough?

[Pamk1949]

I am curently on my second bout of GCA/PMR, and curently on prednisone with every other week Actemra injections. Last week I had PMR symptoms, so I went up from 1.5 to 2 mg prednisone. Everything seemed fine until last night,( which was 1 week later) when I experienced pressure and tenderness in the temples. I decided to go up to 7 mg this morning to see if that would resolve the headache. My question is would that be enough? As usual, these situations don’t happen during the week, and it’s Sunday morning here in the USA

[PMRpro Ambassador]

Is it relieving the problem? How long have you been on Actemra - and have you always been on bo-weekly injections?

[Pamk1949 in reply to PMRpro]

I have been on Actemra for 6 months, neutrophils were too low at weekly injections, so rhemy decided every other week. I never had headaches first time around with GCA, nor did I have a flare, other than knee problems.

[Pamk1949 in reply to Pamk1949]

Yes, the extra 5 seems to relieve the headaches, I think

[PMRpro Ambassador in reply to Pamk1949]

Then it should be enough. But is your rheumy aware that about half of all patients on TCZ for GCA do not get off pred entirely? It also does not cure the autoimmune disorder and with inadequate pred, the inflammation will build up again. Obviously, biweekly is not enough and you need more pred.

[Pamk1949 in reply to PMRpro]

Might sound silly, but I’ve been wondering why would I continue Actemra then? Is there a benefit since I’m on low doses of prednisone?

[PMRpro Ambassador in reply to Pamk1949]

It is very likely what is keeping you at the low dose - it is a very good if expensive steroid sparer in PMR/GCA. Stop it altogether and you may end up back at a much higher dose of pred.

[Pamk1949 in reply to PMRpro]

Thank you PMRpro for your usual excellent advice! I’ll keep Actemra going, but taper at a much slower pace then. That extra + 5 mg really made things better, and then drop down to 2.5 in a few days—and stay there for a while? I’m not sure what I would do without this website!

[PMRpro Ambassador in reply to Pamk1949]

With only biweekly jabs you may need a bit more - keep an eye on things.

[Petcut]

Sorry can’t give any advice on Actemra as I only had ten weeks (one weekly) and it made me feel awful,bad head ache and shaking so I stopped it,I only take Pred and am very slowly reducing,,I’m quite chuffed that I’m now down to 3 1/2 mg daily and doing o.k hope you have better luck with Actemra