Tapering Regime while on Kevzara (or other biologic)

[artfingers]

I'm in the U.S. getting Kevzara (third injection is this Tuesday i.e. week six). I am grateful I was allowed to try Kevzara after 9 years on prednisone and never being able to get below 5 mg without a flare amongst other reasons. I have tried to look up the tapering regime for attempting a taper with this new biologic. I'm currently at 5.5 mg prednisone (split dose 8am: 3.5 mg, 6pm: 2 mg). I know very few are on this drug in the UK but in the U.S. or elsewhere is anyone familiar with the tapering regime they used in the original SAPHYR double blind study? Or possibly it would be similar to reducing when using Actemra or Humira? Or should I just follow the usual DSNS method I've used before reducing .5 mg each time? (By the way, in the States, you can get this drug free from the company, Kevzara Connect. I applied for financial assistance and my rheum. prescribed it.) So far, I'm pleased with how Kevzara is working for me. I can sleep better (less pain) at night and easier to move around with less pain and stiffness during the day. I hope it works to get me off steroids we shall see! I'll give it a full two months on the injections before attempting a taper. Thanks for any input! I hope this will be approved overseas soon!

[PMRpro Ambassador]

The Kevzara may help you get off that last 5mg pred in terms of the PMR but it isn't going to make much difference to the time your adrenal function is going to take to wake up and smell the coffee. That is still going to require a slow and patient taper to allow the adrenal glands to adjust slowly to the lack of corticosteroid and making more to top up the pred dose.

I'm not sure what the cohort was in the SAPHYR trial - but I bet not many had been on pred for 9 years and the longer you have been on pred, the slower adrenal function is likely to be in waking up, if indeed it does at all.

[artfingers in reply to PMRpro]

Oh. Right. The adrenal function - that is exactly right. I shall keep it very slow and careful so as to tease those darned adrenals into waking up! If they will, I hope! From what I have read or listened to on youtube from Dr. Robert Spiera, and reading the abstracts, it was a small cohort 119? in the Phase 3 study for Sarilumab (they wanted 280 patients but Covid hit) and not sure how long they'd had PMR but it was noted they were "recalcitrant", on over 7 mg pred, and unable to taper down. Fascinating to read. I wish they'd find a biologic to target JAK inhibitors and all others affecting our disease besides just IL-6.

[PMRpro Ambassador in reply to artfingers]

Trouble is - you can only have one biologic at a time ...

I knew it was very small because of Covid - I meant more their histories. I have a suspicion that 2 fails with a daft taper would have got you in the trial!

[Paulagcl]

I live in California and have been on Kevzzra for a year. You still need to taper. The hope is that it helps you to get off prednisone faster. I right now have a low white blood count so I'm being followed to see if the Kevzara is causing it. However otherwise, it's worked well for me. Still, you need to design your own taper, as others are telling you. Listen to your body --the adrenals still have to awaken at their own speed. Are you an artist? Looking at your "artfingers" user name. I am an artist.

[oaktree5]

Good luck, and keep on with the kevzara, close cousin on it a year w positive experience, he ignored side effects as long as he could, real cowboy about things, but monitor new research, maybe on Pub Med articles if you are in medical field

[sidra1968]

Thanks for the "Kevzara Connect" tip!