Advice re conundrum with tapering

[Bachblues]

I have been reducing Pred regularly - I am on weekly Tocilizumab injections, using a one week old dose/new dose and then 2 weeks on new dose system. This was going fine until…7/6 dosage…and then I did nine days @6 and on tenth got visual disturbance and the next day claudication. Went back to 7 after talking with consultant and had new bloods done. These were fine, so it’s a conundrum - ESR 2, CRP 1, chol 6.7 which is lower than previous, neutrophil count recovered, normal total white blood cells. Is it withdrawal or flare? She suggests stay at 7 for a couple more days to see if I stabilise (I am suffering back ache and some frontal headache) & I’m game to try, then if no good - go to 5 days at 10mg to clear the symptoms then 9mg 2 days, 8mg 2 days, then 7mg for 2 weeks before we aim for 7/6mg. Any thoughts? Thanks.

[piglette]

From experience I would never try and reduce if I did not feel normal and had niggles that I did not have when I first took steroids. I have had too many doctors wanting me to race to zero. Withdrawal seems to start a day or two after the reduction then subsides, while a flare seems to take a week or so to occur.

[Bachblues in reply to piglette]

Instructive as mine was over a week after - thanks.

[PMRpro Ambassador]

It isn't a conundrum at all - you CANNOT use ESR and CRP to monitor disease activity when on tocilizumab because of the way it works, suppressing the production of CRP and in parallel the ESR. It works on a single mechanism for the creation of inflammation, IL-6, but there are at least 3 mechanisms that may be involved in GCA, As a result, in the clinical trials TCZ only worked for about half of patients to get them entirely off pred, the rest get to a much lower dose of pred but it is common for them to require IRO 8-10mg pred despite the TCZ.

I am astounded at how many doctors are using a drug where they have made no attempt to read and understand the documentation or relevant studies about its use!!!