Kevzara (sarilumab) to treat PMR

@stonewheel

There are no "tapering guidelines" for Kevzara or Actemra.

There really aren't any "official guidelines" for tapering off Prednisone after an IL-6 inhibitor is started either. You still need to taper off Prednisone slowly because of the adrenal issue. To be honest, the adrenal issue is why Prednisone is tapered off slowly in the first place.

The thing that amazed me was how I could taper off Prednisone quickly in the past for my other autoimmune problems that I had before PMR was diagnosed. I could easily go from 60 mg and sometimes 100 mg and back to zero in a month or two. My other autoimmune conditions would stay in remission for about a year but would flare up again at a later time. I could be off prednisone for long stretches of time. I didn't need to take Prednisone every day for many years until PMR was diagnosed,

My ophthalmologist would quickly prescribe 60 mg of Prednisone for flares of uveitis. My ophthalmologist would allow me to increase and decrease my dose as needed. My uveitis flares could rapidly progress and would cause temporary vision loss until a high dose of prednisone cleared up the inflammation inside my eye. The uveitis inflammation didn't stop as soon as Prednisone was started. The inflammation took a couple of weeks to subside and then I could stop Prednisone.

Prednisone actually shut down my entire immune response rather than targeting the uveitis inflammation itself. It only took several weeks for the inflammatory cells to clear out for my eyes. There are many misconceptions about what prednisone actually does and how soon it can be tapered when you don't take Prednisone very long.

The "long term" aspect of treating PMR with prednisone is what needs to change. That is when adrenal function gets suppressed and causes additional problems. The side effects of high dose Prednisone and for a long duration are horrendous. When the adrenals are suppressed it is difficult to get off Prednisone unless you taper off very slowly. Anything more than approximately 5 mg of prednisone is going to shut down the adrenals when you take Prednisone for a long time.

A long time to be on prednisone is measured in a few months rather than a couple of years like PMR and GCA are treated. The biologics for PMR/GCA are changing the landscape for how soon people can get off prednisone. That is a good thing!

There is still room for improvement.
https://www.the-rheumatologist.org/article/whats-new-in-polymyalgia-rheumatica/

Thanks for the reply and the link at the bottom is an appreciated rabbit hole of glucocorticiod sparing medicines other than saralumab and tocilizumab.
Kevzara published a steroid taper plan on their website. A 52 week study vs a placebo. I linked it somewhere a couple of times. The 28ish% success rate of no remission or flares after 52 weeks leaves a lot of room for improvement in the PMR club.

@laurelfagan
How difficult was your prednisone taper and at what dose of prednisone did you start kevzara? I've been tapering down from 25mg because of a subsequent SMM diagnosis. I was doing 2.5mg decreases every 10 days. I'm at 10mg now and holding for 2 weeks, then 1mg drop each week until I reach 5mg. My rheumatologist added 3mg LDN as a bridge. My hematologist oncologist signed off on the use of kevzara almost 2 weeks ago but I'm still waiting for all the other approvals. My PMR is mild to moderate at 10mg with LDN.

@kjoed53 my Kevzara exp was…..is……
At abt 8 mg prednisone when kevzara started. Kevzara biweekly. Kevzara took abt 2.5-3 months to kick in fully. During that period I was able to taper off prednisone fully. Note: no other health issues.
Good luck

@stonewheel
My Rheumatologist says the low WBC and ANC is the main side effect of Kevzara. It was a good 6 months before I started to have issues. I got down to 3.6 wBC and ANC at 0.6. Then we waited 4weeks raking the Kevzara and fortunately I was doing ok. We did bloodwork at that time and my numbers were back up to low normal at 4.3 WBC and ANC 1.4. Since I started Kevzara back in August my CRP has stayed in normal range and my doctor ok with my numbers being low normal. I am going to start extending my injections a week more each time so hoping 5weeks on this injection then six etc. wish my luck. I have doing well and feel amazing on the Kevzara. On Pred I had to start a blood pressure medication because my blood pressure was going crazy! Stopped that medication once off Pred.

@laurelfagan
Thanks for your reply.
And, yes, of course, good luck!
I too feel so much better with Kevzara. I look forward to being off Prednisone, so I can stop the meds that I take for its side effects because they will go away.
Again, wishing you the best of luck and good health.