1. < Polymyalgia Rheumatica (PMR)
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Still having PMR symptoms on Kevzara AND prednisone

Posted by sbgigi @sbgigi, Sep 19 1:48pm

Hello fellow PMR sufferers! I need some help from you, to find out if anyone else is experiencing what I am and if there are any 'solutions' or helpful things to do in this situation: Background: DX with PMR in June 2026. Started prednisone at 20mg and had immediate relief from PMR flare and extreme pain and inability to even walk! At 5 days doc dropped dose to 15mg and all pain returned. So he increased it to 30mg. On that for a month, then down to 20mg without return of flare. Unfortunately, I have had SEVERE reactions to the pred with multiple side-effects. So after two months he started me on Kevzara and dropped the prednisone to 17.5mg.

And here's the important bit, and my question: Since starting the Kevzara and going to 17.5mg of pred, I have continuous (not just AM) pain in my skin and subcutaneous tissues everywhere that PMR attacks the body (hips, legs, shoulders, back, etc.) the pain is not totally debilitating, but it feels as though my skin is on fire and even clothes touching is horrible! Pain in thighs makes it difficult to walk, since clothes rub on thighs!

I have only been on the Kevzara for one month, so perhaps that is the problem. Research says at least 3 months for Kevzara to be effective. But my doc (good rheumatologist) says he has never seen these symptoms before and is now blaming them on my back! Even the pain and sensitivity in the neck and shoulder area - but I only have a back problem in my lumbar area, so that can't be it!

He wants me to decrease my pred to 15 mg, because it is killing me, and I agree, but I am afraid of causing a new 'flare' of the PMR - and to be honest I'm just not sure how much more of this I can take without some relief.

Hoping someone in this support group has similar experience, guidance or help they can share with me. Thank you all so much!

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

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tweetypie13 | @tweetypie13 | Sep 21 5:38pm
In reply to @sbgigi "@boomermeg Thanks for the reply and the link. I ust clarify though - I had my..." + (show)
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@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!

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@sbgigi Note: it takes up to 3 months for Kevzara to kick in….so might be too soon to pass judgement on Kevzara. 🤔

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grownupcf | @grownupcf | Sep 21 6:50pm

I’m at 4 months on Kevzara, prednisone at 11mg.
And admittedly I’m on the fence. I think the Kevzara is working. I was at 15 and above on prednisone prior to May. My rheumatologist is annoyed I’ve not tapered faster but I have had times where after a few days I went back up a mg for a week or so as the symptoms started coming back. Her response is the Kevzara should have eliminated that by now.
So is that the case? It rained yesterday and I felt like crap. Not as bad as I was prior to prednisone (like others have mentioned at my worst I could not walk…completely froze up), but not good (the return of the arm and hip pain, slow to stand, and that feeling like I’m getting sick)
And I guess if that’s how it is then I live with it, with a few bad days here and there, and hope for the remission everyone speaks of.

My rheumatologist is moving so I’ll have someone new. This forum has been more helpful than she has. But I did get the Kevzara so I’m hoping it’s just taking time.

The prednisone tapering I do think is making me tired. I definitely get the full body sweats. I have not gotten the skin burning that’s mentioned here. I will continue to try tapering a mg a month.

And likewise I think this all really flared about a year ago in a way I could not ignore (which made it easier for a doctor to diagnose because the combo of symptoms are so obvious and frankly weird) due to severe stress. Though I recall some of the symptoms coming on all through last year. Especially severe headaches (which I no longer get so I’m not sure of that was GCR).

I guess I’m wondering is the Kevzara working?

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eparnold0219 | @eparnold0219 | Sep 22 7:40am
In reply to @ethiguy "I was on prednisone for almost 2 years and I developed uncontrollable swelling, high blood pressure,..." + (show)
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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.

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@ethiguy I found working my joints in the morning helps . I bend my knees oin bed 10-20 times and work my arms as well. I am on Kevzara and Prednisone.

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tweetypie13 | @tweetypie13 | Sep 22 7:44am
In reply to @eparnold0219 "@ethiguy I found working my joints in the morning helps . I bend my knees oin..." + (show)
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@ethiguy I found working my joints in the morning helps . I bend my knees oin bed 10-20 times and work my arms as well. I am on Kevzara and Prednisone.

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@eparnold0219 I do,that too…..big help

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caroljeand | @caroljeand | Sep 22 9:09am

Skin issues may be a side effect of PMR … I was having hives off and on when diagnosed and on prednisone. Couldn’t figure out what the itching and hives were from but since I’m off the steroids and only on Kevzara I’ve had only one small episode with itching and hives in the past half year.
I was convinced the prednisone was the cause but maybe PMR can throw in some skin issues. 🤷🏻‍♀️

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ga29 | @ga29 | Sep 22 1:06pm

I’m not sure what is causing the skin issues. I think Kevzara caused some of the rashes, the burning sensation may be the PMR itself. Hard to say!
I’m giving Kevzara the full 3 months. The methotrexate, I’m not sure I will stay on it. The listed side effects do worry me, since I’m having some stomach pains that come and go. Hurts for a while then stops completely. Weird.

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sbgigi | @sbgigi | Sep 22 1:26pm
In reply to @boomermeg "@sbgigi Thank you for clarifying your skin burning symptoms and when they started. I also noticed..." + (show)
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@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.

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@boomermeg Thanks for the heads-up about iron levels and potential anemia. My next blood test isn't for four weeks, but will be sure to check that. And to clarify, I am not on methotrexate - only pred and Kevzara. Oh, and another eight medications to deal with the side effects of pred!! (stomach issues; dry mouth; infusion to protect bone density; sleep disturbances; etc!)

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boomermeg | @boomermeg | Sep 22 2:12pm
In reply to @ga29 "I’m not sure what is causing the skin issues. I think Kevzara caused some of the..." + (show)
Profile picture for ga29 @ga29

I’m not sure what is causing the skin issues. I think Kevzara caused some of the rashes, the burning sensation may be the PMR itself. Hard to say!
I’m giving Kevzara the full 3 months. The methotrexate, I’m not sure I will stay on it. The listed side effects do worry me, since I’m having some stomach pains that come and go. Hurts for a while then stops completely. Weird.

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@ga29
They do say stomach pain is cause for concern due to possible perforation. Might want to let Dr know at least. Hope it doesn't cause anything serious and that it really helps. Blessings

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boomermeg | @boomermeg | Sep 22 2:22pm
In reply to @sbgigi "@boomermeg Thanks for the heads-up about iron levels and potential anemia. My next blood test isn't..." + (show)
Profile picture for sbgigi @sbgigi

@boomermeg Thanks for the heads-up about iron levels and potential anemia. My next blood test isn't for four weeks, but will be sure to check that. And to clarify, I am not on methotrexate - only pred and Kevzara. Oh, and another eight medications to deal with the side effects of pred!! (stomach issues; dry mouth; infusion to protect bone density; sleep disturbances; etc!)

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@sbgigi
Wow! 8?! How long have you been on Prednisone? I'm so sorry to hear about so many meds. I was on so many meds too years ago for different issues (nothing to do with PMR), GERD-proton pump inhibitor which can lead to osteoporosis so I got off that, Neurontin for nerve pain that didn't help that pain just made me dizzy, so I got off that, and others I can't remember right now. Each one had it's own side effects that I had to say, is this really helping me or not, and then decide to
"stay or go" so to speak. It's tough. I hope you find out about Iron or anything else might be contributing to feeling cold all the time.
Blessings

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ga29 | @ga29 | Sep 22 5:01pm
In reply to @boomermeg "@ga29 They do say stomach pain is cause for concern due to possible perforation. Might want..." + (show)
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@ga29
They do say stomach pain is cause for concern due to possible perforation. Might want to let Dr know at least. Hope it doesn't cause anything serious and that it really helps. Blessings

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@boomermeg thanks. If it hurt all the time I would be worried about that, but it comes and goes?
I just had my bloodwork done the other day.
I want to stop taking the methotrexate, and just take the kevzara and pred.
The doctor wants me to keep taking all 3 until I've reduced the pred.
I just read the possible side effects from the MXT - it sounds like everything I'm having is on that list.
Vision problems, headaches, stomach pain, bone pain, dizziness, hair loss, mouth sores, signs of anemia, skin discoloration, it goes on and on. Most people won't get these problems, though.

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