Does anyone know whether I will experience steroid withdrawal even though I’m on tocilizumab?

[Erikaknitssocks]

I have tapered down (from 40mg) to 5mg pred. I began a course of weekly TCZ injections 8 weeks ago. I need to stop taking the pred. I’m wary as I have experienced steroid withdrawal on a prior occasion. I am debating whether to keep taking it over Christmas or to stop now… and I’m wondering whether: if the TCZ is a steroid-sparer, does that mean no withdrawal symptoms when I stop?? Thank you.

[SheffieldJane]

I just managed to get down to 10 mgs Pred with Tocilizumab, then I needed a slow taper of half a mg.

[PMRpro Ambassador]

No, it doesn't mean it removes the chances of "steroid withdrawal" although it does depend on exactly what you mean by steroid withdrawal. If you are on TCS you shouldn't experience PMR/GCA symptom resurgence, so no withdrawal in that sense. But steroid withdrawal in the sense of adrenal symptoms isn't changed by being on TCZ, it just means you can stick at low pred without PMR/GCA being a problem. Although TCZ doesn;t work 100% for half of patients - GCA can be caused by 3 different mechanisms and TCZ only works for one. If you have the other two, you will possibly need some pred.

Down to 10mg the reduction with TCZ is relatively easy. However, depending on how long you have been on pred, from about 7mg you are dependent on the return of adrenal function in producing the natural corticosteroid cortisol. It only gets going again in the absence of pred so the TCZ makes that more likely that you can stay at lower doses while it establishes again. However, it takes time, it doesn't happen overnight, If you are on 5mg now, then you must NOT stop suddenly, you need to taper slowly enough to be safe having artificial enough pred to reduce the risk of an adrenal crisis while the adrenal glands restart, And that takes months rather than weeks.

[Erikaknitssocks in reply to PMRpro]

Thank you so much for this, I thought I’d already replied … but I can’t see anything on here so I must’ve imagined it 🤪 I will contact my GP and see if they will prescribe some smaller doses of pred so I can wean off slowly. I don’t want to ruin Christmas as I’ve been feeling better recently and the ‘withdrawal’ from pred last year was horrid (the GCA/ LVV didn’t develop till this year).

[PMRpro Ambassador in reply to Erikaknitssocks]

If they get sticky, use one of the slowed tapers we go on about for a larger step down - but you really do need 1mg tablets