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KEVZARA approved 9/29, side effects or positive info?
Kevzara
Today (9/29/26) I got the news my Insurance approved the prior authorization for Kevzara for me. I asked the Dr's office to let me know the schedule, how the RX is written. I have no idea how often etc she wants me to take it. I'm really concerned about side effects, especially after hearing people mention their skin felt like it was burning. Some said not sure if it was Kevzara or not. My skin is super thin and sensitive. I can't use any pain patch or anything that irritates it. Concerned re injection site issues for this reason.
I did have IL6 blood test and it was high 21.4 on 8/14/26 and had just started Prednisone 7/31/26 @ 15mg, had to go up to 20mg and was on 20mg 8/14.
Still had to go up to 25mg on 8/15 because pain still present. So, if my IL6 high result means anything to anyone re "should I try Kevzara", please let me know.
I've since tapered down to 17.5mg Prednisone currently (started Sat. 9/26 -17.5mg for 14 days). Will continue to taper 2.5mg every 14 days until next Rheumatologist appt in early November.
Any input appreciated It's so hard to decide because I have many concerns about RXs in general and especially biologic type that "target" a specific protein or anything.
I posted a previous Discussion titled "Wait for flare before starting Kevzara?
Thank you to everyone who answered there. My Prednisone dose has changed and I've read more re Kevzara side effects so appreciate any further input.
The cost this year is another issue.
Thanks very much.
Blessings.
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I am on Kevzara with no real issues. You mention your thin skin which I have too. Hasn’t been an issue except for the fact that I have a hard time injecting my legs because I have very little fat in them. I’m not brave enough to stick it in my stomach area (where there is plenty of fat) and have no one at home to help me to do that.
I’m stretching out injections so it’s not as bad. I started them in November of 2025 twice a month with a smooth transition off prednisone.
Good luck to you in this journey!
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5 ReactionsI have been on kevara for 3 years. Before kevzara I started prednisone at 75mg per day to reduce the inflammation in my head arteries and severe pain in my legs. During this period the lowest I could get on prednisone was 9mg. Below that I experienced flairs many times. Other meds were added to the prednisone with little change. It took me 3 months to get off prednisone and another 3 to 6 months to reverse some of its side effects. I still have aches and pains but the kevzara for me has been worth it! It took a while to rebuild my muscle mass. I did this by walking walking walking and stretching every morning. Within 3 months of evzara I was back on my bike cycling over 40 km per outing!
I agree with dadcue, everyone's path is unique.
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5 Reactions@caroljeand
Thank you so much for letting me know you haven't had any issues since Nov 2025. That's very helpful and that your skin hasn't been an issue either.
I know each one of us can react differently but it does help me to hear so many people have been fine on it with no major bad side effects.
I'm glad you're doing well on it and thank you again for posting your experience with Kevzara. Blessings.
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1 Reaction@mikeydee
Thank you so much for sharing this. 3 years is a long track record too. It's great to hear you've been able to recover so well and able to cycle 40km per trip!! Wish I could. I need to do what you've done. Walking Walking Walking, stretching and anything else I can to build myself up again. I was already at a deficit before PMR hit due to many other musculoskeletal issues with my spine, chronic pain, sleep apnea and a bunch of Osteoarthritis. I'm 73 so I've already lost muscle mass too from all of the above. You've given me some incentive to do whatever I can to get moving again. Energy has been an issue for years due to sleep apnea/chronic sleep deprivation etc.
But, need to find a way. Thanks very much again, and I'm so happy for your progress and return to what you love.
Blessings.
I take a Kevzara injection every 2 weeks. It makers me tired for the first few days, but have felt no other undesirable side affects. Drugs are usually problematic with me, but not this one. Reading the list of possible side effects made me delay it for a couple of months. I am glad to be on it and reducing prednisone. It is by far better at over 6 months into the PMR battle than Prednisone alone side effects. My skin is also getting thinner and I was just diagnosed with skin cancer (nor from sun exposure) for the first time in my life which Prednisone seems to increase the chances of. I am now considering getting non-live vaccines, concerned about side effects while on Kevzara and Prednisone. My Rheumy says "go for it" - Flu and COVID19. Good luck!
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3 Reactions@eparnold0219
Thank you so much for your post and sharing your experience. It helps to know more and more people who has been fine with it. I too have been looking at the list of possible side effects and that has made me wary, but hearing from many people who take it, and some that have for a long time (some months, some years) is a huge relief. I do struggle with energy/being tired every day due to sleep apnea (both obstructive and central) which makes me in a perpetual state of sleep deprivation. But, if it makes me tired I'll have to deal with it because I need to get off the Prednisone ASAP and hopefully prevent any issues from Prednisone.
I've had a small patch of skin cancer from the sun but had it removed. I hope you'll be ok with it too. Thank you again for sharing your positive experience. It's very helpful. Blessings.
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2 Reactions@boomermeg
I rotate the injection site around my navel.
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3 Reactions@mikeydee
The approach to treatment is different for everyone too. I don't think one approach will work for everyone. That has been the problem with long term prednisone being the primary treatment option for everyone for such a long time. Granted it was nice to take Prednisone in the short term but we need better alternatives if PMR/GCA can last for many years.
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2 Reactions@kjoed53
Thank you. Someone said the same thing. I'll try that. Blessings.
@dadcue
You're so right. It was a true blessing to get fast relief from that brutal pain and crazy middle of night wake up, destroyed sleep, and myriad of other symptoms. It was almost unbelievable. But in the long run it's so unhealthy for everyone. It's good that more are at least being developed but hope that they'll bring the prices way down. It's totally out of reach for far too many. Even for those who can do it, it's still way too expensive to have to use for years, should it be necessary. At least in my opinion it is. Thanks again Mike. Blessings.