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!
Tapering Regime while on Kevzara (or other biologic) - PMRGCAuk
Tapering Regime while on Kevzara (or other biologic)
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.
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.
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!
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.
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
Thanks for the "Kevzara Connect" tip!
I am just getting ready to start Kevzara. I have been tapering before this, do I have to stop the taper? I am very nervous re this drug.
No - the Kevzara should make the taper easier once it kicks in but if it is like Actemra it doesn't happen straight away. My rheumy said to wait a couple of months before continuing attempts to taper.
The pharmacist at Theracom (the pharmacy that will be sending the Kevzara) said it is likely that I will have to be on Kevzara for the rest of my life. Giving myself an injection every two weeks for the rest of my life is unsettling. I am trying to weigh the pros and cons. I have successfully tapered after a flare which kicked me up to 15 mg after a year or so at 4.5. Currently I am at 10. I just don't know that I want to introduce something new to my body that I have to be committed to forever. Ugh.
Sounds as if the pharmacist doesn’t understand PMR if they think you are going to be on Kezvara for life.
interesting... I have sent a message to my rheumatologist re this lifelong thing. I will see how she responds. Thank you.
You are no more likely to need to be on Kevzara for the rest of your life than you are to be on pred. You only need either of them until the underlying autoimmune disorder that causes the inflammation which is the root of the symptoms and in PMR that happens in well over 90% of patients. There is a small number of us that have a long-lasting version of PMR but we really are a small minority.
Interesting. So you have a long-lasting version? How long, may I ask?
The first symptoms started slowly 20 years ago but weren't diagnosed for 5 years when I finally got pred, There are a few patients on the forum who are over 10 years.
So you have been on pred for over 10 years?
15 years. Or maybe 16 - can't remember exactly. And likely to be for life I suspect because even at 6mg I can feel the lack of adrenal function though it is the bicep tendinitis that drives me back to 7mg to be able to function - not being able use my hands is a bit of a disadvantage as I live on my own!
I've been on Kevzara now for three months roughly - no side effects. I am tapering super slowly but it seems to be working and I will say I think the Kevzara makes it easier/ smoother. I'm taking it really slow. Dead slow method is working. No flares thankfully. I have had minor injection site redness, no big deal. Zyrtec and hydrocortisone seem to help that. I'm now at 4.5/5 hoping to get to stay at 4.5 for awhile before moving down to 4 pred. I'm able to be more active with no flares (a miracle in itself) but I'm being careful. Good luck. I'm so glad to be on it! Oh, when you do the shot, make sure to warm it to room temperature for a few hours before injecting.
Thank you.
artfingers, I have taken two doses of Kevzara. I am checking in to see how you are doing and how your tapering is going. I am ready to get of the Prednisone, but nervous about relapse and adrenals kicking in.
So far so good. No relapses or flares. I think I'm at the three month mark now. I started at 7mg prednisone, now I am at 4 1/2 mg of pred (split dose 3 in morning 1 and 1/2 at night). I don't seem to have an issue with my taper except feeling more of my arthritis pain. I did notice I get a redness near the injection site but my rheumatologist and I agree it isn't too bad and we are just keeping an eye on it. I think my main issue is I am really active in the summer and my adrenals having to "wake up" don't like that. My solution is to try to pace myself and mix up the walking, kayaking or other activities and get lots of extra sleep. So far so good. I will stay at this dose till I get back from my month in Maine (climbing and walking a lot). I could NOT get to this point without Kevzara so I am really grateful as it is helping me steadily and SLOWLY reduce. I suspect if I was a couch potato like my husband it would go faster. Hah!
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