Still having PMR symptoms on Kevzara AND prednisone

Did you check with Kevzara company?

I feel the same way! Hang in there. Was on Pred from 3/25 until 8/26 with a couple of unsuccessful tapers. Added Methotrexate 5/26 but it is ineffective. I see the rheumatologist this week and plan to ask if there are other good options. For now, Tylenol Arthritis and lots of misery. The consensus does seem to be that Kevzara takes 3 months. I guess we have plenty of company.

Have you confirmed that GCA isn’t causing your additional pain?
When I was on prednisone and transitioned to kevzara I didn’t have any PMR pain symptoms so I can’t attest to how long it takes for kevzara to kick in. It was just a smooth transition.
Sorry for all you are going through and hope you can get some answers.

I am on Kevzara, started first injection for month 3;
I’ve been on methotrexate, 17.5 mg, and now down to 6 mg prednisolone. I’ve reduced my steroid dose from 8 mg., a few times now- although he had me up to 12 mg. For 2 weeks when I complained I still had pain.
I have osteopenia, so my dose has never been high.
I don’t remember how long my skin has felt this burning sensation. It’s an awful sensation!

Pain all over it seems, but to try to narrow that down- shoulders, neck, (had cervical fusions, last one 9/29/25, so there’s that!) lower back, hips thighs, and feet.
Which drug causes this? Or is it the PMR ?

@ga29
I've never experienced the burning sensation that you described. Are you sure that's PMR. What does your rheumatologist say? My PMR pain was debilitating, encompassing both shoulders, neck, lower back and hip girdle. I felt it in my arms down to my elbows and my legs down to my knees. I have to stop prednisone because I also have SMM. I took shot #5 of kevzara last week. It takes 3 months or more to reach full effect.

@ga29
I'm so sorry to hear about this "burning sensation" on your skin that started after beginning Kevzara.
My Rheumatologist wants me to start Kevzara because she's concerned about me having flares because I had to step up 2x's in the beginning to get all my pain/symptoms under control. My pain was brutal and incessant also. I just did a "search query" re "is there any information about
patients complaining about burning skin, skin sensitivity from taking Kevzara?"
I asked the question on Brave browser.
Yes. The link is below but I don't know if it stays available for more than a day or so. I also clicked on some of the Reddit comments (they show up below) and other people mentioned the "skin burning sensation" sensitivity etc. Some people said they still have it even after stopping Kevzara.
Within those Reddit comments, someone mentioned "Allodynia ." It could be a hypersensitivity reaction to Kevzara??
I don't know but I hope your Dr has some information. I've had nerve pain in legs, arms, hands and have no interest in any further "burning, sensation," pain or sensitivity on my skin or elsewhere.
I hope everyone experiencing this can get answers and help. It gives me pause about starting Kevzara. It's scary enough taking any medication.
Hard to know how each one of us might react. I think I saw someone mention that if we have certain diseases in our family, we can be more prone to different types of reactions. Makes sense. Here's the link of my query:
https://search.brave.com/search
I hope it gives some information. Maybe use that info to do more research. It's interesting that several people here are saying similar things about skin burning. They only mention injection site skin issues but some on Reddit said they had some pretty bad skin issues at injection sites that were more than irritated. Blessings.

I was on prednisone for almost 2 years and I developed uncontrollable swelling, high blood pressure, and weight gain. I switched to Kevzara and pain abated but had occasional flare-ups. I have tried going off since I didn’t have major flare-ups. My flare-ups result in being bed-ridden because I lose complete use of my legs ,loss of appetite, and bladder control. Now my pain is back. I’m going back up to Kevzara twice a month. I’m experiencing severe pain, fatigue and depression.

@boomermeg Thanks for the reply and the link. I ust clarify though - I had my pred dropped to 17.5mg (from 20) and that's when the skin sensitivity and burning began. I didn't actually start the Kevzara until 12 days later, so I don't think that's the cause. I think that the skin/dermis issues are due to the lowered pred - but my rheumy says he has never heard of this! Also, all of a sudden I am cold all the time. And I will research if that is part of Kevzara - or not! On just pred I was sweating buckets - just like being in menopause again!!! It was awful, but I guess I should be grateful that at least ONE of the pred side-effects has gone underground.. for now!

@sbgigi
Thank you for clarifying your skin burning symptoms and when they started. I also noticed I sweat more at the 25mg Prednisone, not as much at 20mg now. I haven't felt cold on Prednisone, but before taking it my iron saturation was at 9!!! Critically low on lab test. Had to get Venofer Iron IV's at my PCP NP request. But, the idea of anemia came up before diagnosed with PMR, and realizing it could be the high PMR inflammation caused hepcedin to release which blocks available iron stores from being available for body to use. My Ferritin was fine, so it was most likely from the inflammation, but could also be: GI bleed/ulcer, iron absorption issue, or diet, or celiac disease . Have you had your iron saturation, other iron and Ferritin checked since feeling so cold. That's how I felt until I got the iron IVs. I've since heard that we need to see if iron saturation goes back up to normal range after taking Prednisone or not, as may not need iron IV's. But if you're still cold, it's another possibility???
I hope you get answers soon. I know how hard it is to deal with so many different health/physical issues that cause pain/discomfort etc.
So, it sounds like you're sure the skin sensitivity/burning definitely didn't start when started Kevzara, but before, when reducing Prednisone. Are you taking any other medication besides Prednisone and Kevzara? Were you on more than Prednisone when skin stuff started before Kevzara? Possible interaction if yes??
I noticed above in this thread "ga29" also has the skin sensitivity/pain issue. Maybe you can reply and compare notes?
Think she was also on Methotrexate at least at some point at same time as Prednisone?
I hope you get some answers and relief from the "cold" all the time (I was too before iron), the skin and any pain or other symptoms/side effects. This is a tough disease to "ride." I liked an expression I heard in an unrelated context: it was like "sorting wildcats!!" Yeah, like that I'd say....
Blessings.

@ga29
Were you on methotrexate and prednisone when the skin issues started prior to Kevzara? Could skin issues be an interaction between meds? Any other medications you're taking with prednisone and methotrexate?
Prednisone, methotrexate and Kevzara? Could be interaction? I saw below in this same thread "sigbi" has same skin issues. Might want to connect and compare notes?? I hope you can research, ask about interactions or anything else you can think of, as well as people here's input and find some answers and relief. This is a tough disease and anything on top of it is really rough, I know.
Blessings.