Break from Tocilizumab and now problem with tapering

[PastelsinArt]

Hi, I was advised to stop taking my weekly Tocilizumab for one week when I had shingles, then 2 weeks later (after 3rd Covid vaccination followed by flu jab) to skip it for 2 weeks as my neutrophyls were low. I continued tapering pred from 4.5 to 3.5 over 5 weeks. I'm getting stiffness in my hips and lower back, as well as (I think) bursitis in my right hip, which I used to get before my PMR and GCA started a couple of years ago. I've had 2 weeks back on Toci but have started taking 5mg as well to try to get over this stiffness which is affecting ability to do my usual walks and causing pain getting upstairs. Am I doing the right thing? Should I increase the pred by more for a short period before dropping back down?

[PMRpro Ambassador]

TCZ only works 100% for about half of patients - there are at least 3 different causes of the inflammation in GCA and TCZ only works for one of them. If either or both of the other two are involved in your GCA then you may need some pred for that. It is something you need to discuss with the doctor who authorises your TCZ. In addition, and worth considering, is that poor adrenal function can also lead to similar symptoms. The TCZ lets you reduce the pred quickly - but only time at a lower pred dose brings the adrenals back into play. Perhaps you need to slow down a bit at this stage.

[PastelsinArt in reply to PMRpro]

Thank you. I've been on TCZ a year now and my consultant, who is excellent, thinks it is helping. I will be cautious about pred reduction - it's been a bit up and down but a steady, slow, reduction for a while now. Getting shingles, then the low neutrophyl count after my vaccinations has been a setback. I'm keen to get fit again, but heeding the comments on Health Unlocked about not recklessly rushing to zero!

[PMRpro Ambassador in reply to PastelsinArt]

You have until March - worth discussing it now though if you get the chance.

[PastelsinArt]

Thank you, that's interesting and useful. I put my current problems down to the 3 weeks I had to miss my TCZ, but I'll try to contact the consultant and discuss it.