GCA and starting Actemra at 10 mg

[Pamk1949]

Hello this is my second time with GCA. The first time (2017) I also had PMR and tapered prednisone over 4 years, very slowly. After almost a year off of prednisone completely I contacted GCA again and started again at 60mg prednisone. Actemra was not started until I was at 10 mg.

currently I’m at 3 and a half daily with Actemra every other week.

My question is, at this point in my taper is Actemra even worth it? I noticed here that people on Actemra are tapering just as slow as I did before Actemra. NowI have low neutrophils in my testing as well as high lapise (worried about pancreatitis), and also mottled skin all of a sudden. Should I stay with Actemra?

[SnazzyD]

Was Actemra started at 10mg because you were getting breakthrough symptoms or that you reduced very rapidly to 10mg or both? I would have expected Actemra be introduced earlier on in your second foray into GCA.

Do you mean people on A still reduce slowly under 10mg? People on A might have to reduce just as slowly on doses lower than 10mg because Actemra doesn’t help with the restarting of adrenal gland function. If their adrenal glands are slow to restart working, they have to do a very slow taper anyway.

[Pamk1949 in reply to SnazzyD]

Thank you, SnazzyD! it just took too long to get approved through insurance and rheumatologist didn’t really suggest it, I asked for it. I was hesitant to start Actemra from the beginning too, because I had no problem tapering. Now that I’m at lower doses, and tapering fine without, I’m rethinking. In hindsight, I could have got down from 60-10 faster.

[PMRpro Ambassador]

I wouldn't have started Actemra at 10mg - if you got that low, you don't really need it and it won't help with the stage of adrenal function returning other than keeping the pred really low,

[Pamk1949 in reply to PMRpro]

Thank you PMRpro!!! I’m not going to take another Actemra injection. This time around I might get to 3mg prednisone and stay there a very long time. Maybe like Prof Dasgupta I’ll stay on prednisone. Thanks for your advice!!

[jarn]

Good luck to you. I was on Actemra for nearly 2 yrs and half way through, noticed various skin blotches etc. so was happy to cease the injections. I also noticed that my psoriasis started acting up, and wondered if it was connected. No confirmation but had reported the skin changes to the company. It sounds like you are fine without it.

[Sharitone]

How low are your neutrophils? Here in the UK, you have to take a break from Actemra if you go below 1.0. They should then 'replenish' in a couple of weeks, but you have to have a blood test first to make sure.

[HeaUnlocked]

I was dx with both PMR and GCA (conclusive biopsy). Started on 60mg prednisone, started actemra after tapering to 40mg prednisone. Was able to taper off prednisone 3 months after starting Actemra.

Rheumy had me take Actemra for total of 1yr 9months. He said that tapering slowly and taking it for longer period was thought to help reduce incidence of recurrence.

Took Actemra weekly for 11 months. Went to every other week, then every 3 weeks, finally every 4 weeks. Fingers crossed. I've been off Actemra for little over a year now, off prednisone for about 2 1/2 yrs.