How does Kevzara help with PMR symptoms and pain? I am being weaned

Posted by tsharkey01 @tsharkey01, Sep 8, 2023

I have had Pmr for 15 months now. It took forever to get diagnosed. I have been on 20 - 5 - 1 mg prednisone. My rheumatologist wants me to try kevzara. Is it worth it? I have been this way so long now I have forgotten what normal feels like.

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Profile picture for kjoed53 @kjoed53

@circlepfarm
15mg prednisone didn't work for me. I was also using a cane and feeling the pain every time I moved. I'm on 25mg now and I'm noticing a declining effect after 4 days. It's manageable for now but I don't want to be in pain every day if there's another option. My rheumatologist seems to think that everyone with PMR will respond positively to prednisone, and if they don't then they don't have PMR.

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@kjoed53
You are your own best advocate. Sometimes you have to inc prednisone before you can go down. I am a big advocate of “self taper at times”. Another option is try splitting pred between morning and night so I wake up less painful.
Last.y….GO KEVZARA…it was my savior. If I was you….. I am a bull in a china shop…. Copy off the internet the Kevzara info and FDA approval and take it to your dr, if hard to get into the Rehumy, go to your primary care.
Your comfort/relief is KEY.
Good luck.

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Profile picture for joyl263 @joyl263

@kjoed53 my rheumatologist said the same thing that if you have pmr you will respond to prednisone

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@joyl263
I did respond to it. The first day was amazing. I was pain free for the first time in months. The second day was also good and I slept 9 hours instead of the 5-6 I was before pred. By day 3 it was reducing the pain significantly but not eliminating it. I'm on day 4 now, having taken my pred two hours ago. My pain is significantly reduced but not gone. I don't know if I'm expecting too much or not.

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Profile picture for tweetypie13 @tweetypie13

@kjoed53
You are your own best advocate. Sometimes you have to inc prednisone before you can go down. I am a big advocate of “self taper at times”. Another option is try splitting pred between morning and night so I wake up less painful.
Last.y….GO KEVZARA…it was my savior. If I was you….. I am a bull in a china shop…. Copy off the internet the Kevzara info and FDA approval and take it to your dr, if hard to get into the Rehumy, go to your primary care.
Your comfort/relief is KEY.
Good luck.

Jump to this post

@tweetypie13
I have an easier time getting an appointment with my rheumatologist than I do for my primary. I've looked into kevzara but I'm concerned with the side effects. I'm 73 so I'm already at a health disadvantage. I don't think splitting the dose would work for me. It's not like the pred is wearing off and causing the problem, it's more that the 25mg dose is not making me pain free. I'm not sure if everyone touting pred as a miracle drug for PMR is feeling pain free or less pain.

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Profile picture for kjoed53 @kjoed53

@tweetypie13
I have an easier time getting an appointment with my rheumatologist than I do for my primary. I've looked into kevzara but I'm concerned with the side effects. I'm 73 so I'm already at a health disadvantage. I don't think splitting the dose would work for me. It's not like the pred is wearing off and causing the problem, it's more that the 25mg dose is not making me pain free. I'm not sure if everyone touting pred as a miracle drug for PMR is feeling pain free or less pain.

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@kjoed53 Have hope, I was 78 when my journey began, am abt to be 80.
I had/have no other medical issues, 90% anti inflammatory diet for years, and had only 1 side effect, which came 7 months after starting the Kevzara…it was a known issue, drop in WBC….we then shifted my self administered shots to every 3 wks (instead of every 2) for 2 months and the blood work corrected .
Hope this helps.

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Profile picture for jabrown0407 @jabrown0407

Straight off the internet -
"Kevzara (sarilumab) works by blocking interleukin-6 (IL-6), a protein that drives inflammation, to reduce joint pain, stiffness, and systemic inflammation in conditions like rheumatoid arthritis and polymyalgia rheumatica." This drug is FDA approved for PMR.

I am on Tyenne, a bio-similar drug to Actemra, this drug also is an IL-6 blocker. I am being treated for Giant Cell Vasculitis and it is approved for GCA. I most likely have PMR as well. Regardless, the Tyenne injections have reduced the pain, in about 10 weeks, to a very low level. I have had the pain since 2019 and have been on and off prednisone multiple times since then.

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@jabrown0407
Hi. I just had my first infusion of Tyenne on march 17. For GCA vasculitis in the aorta . It went well. Next infusion April 17. I am hopefully it goes as planned. Currently on 21 mg prednisone, tapering again after next infusion. Have been on prednisone for three years. Ugh. Hopefully your treatment is progressing nicely.

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Profile picture for kjoed53 @kjoed53

@circlepfarm
15mg prednisone didn't work for me. I was also using a cane and feeling the pain every time I moved. I'm on 25mg now and I'm noticing a declining effect after 4 days. It's manageable for now but I don't want to be in pain every day if there's another option. My rheumatologist seems to think that everyone with PMR will respond positively to prednisone, and if they don't then they don't have PMR.

Jump to this post

@kjoed53 Hi. I think that you may need more mgs. of Prednisone per day, at least to begin with. My PCP diagnosed me and started me on 40 mgs. per day. (I’m a male, age 68, 177 lbs.) 20mg in the morning and 20mg 12 hours later.
In two days, I felt like Superman. PMR and all other arthritis pains magically vanished.

My PCP wanted me to begin taper down to 20mg per day, (that’s by half) which I was able to do within 3 weeks.

Note: I developed a side effect which I blame on Prednisone, a blood clot, and had to be hospitalized on 1/1/2026. Now I’m told that I must be on a blood thinner twice a day for the rest of my life.

That reaction hastened approval for Kevzara and I’m down to 7.5mg Prednisone and using Kevzara.

You might talk with your doctor about increasing a bit more Prednisone to see if it calms your PMR. If it does, after a week do your best to taper back down to the dosage that you are currently taking now. From there, consult with your doctor again about a plan for tapering down further.

I’m not a doctor so take my advice with a grain of salt. I’m saying what I would do if I were experiencing what you are experiencing, based on my experience.

PMR will respond to Prednisone. The amount of Prednisone required is different for everybody. I’ve seen here that some respond and start at 10 mg/day and others need 60 mg/day.

Best of wishes.

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Profile picture for stonewheel @stonewheel

@kjoed53 Hi. I think that you may need more mgs. of Prednisone per day, at least to begin with. My PCP diagnosed me and started me on 40 mgs. per day. (I’m a male, age 68, 177 lbs.) 20mg in the morning and 20mg 12 hours later.
In two days, I felt like Superman. PMR and all other arthritis pains magically vanished.

My PCP wanted me to begin taper down to 20mg per day, (that’s by half) which I was able to do within 3 weeks.

Note: I developed a side effect which I blame on Prednisone, a blood clot, and had to be hospitalized on 1/1/2026. Now I’m told that I must be on a blood thinner twice a day for the rest of my life.

That reaction hastened approval for Kevzara and I’m down to 7.5mg Prednisone and using Kevzara.

You might talk with your doctor about increasing a bit more Prednisone to see if it calms your PMR. If it does, after a week do your best to taper back down to the dosage that you are currently taking now. From there, consult with your doctor again about a plan for tapering down further.

I’m not a doctor so take my advice with a grain of salt. I’m saying what I would do if I were experiencing what you are experiencing, based on my experience.

PMR will respond to Prednisone. The amount of Prednisone required is different for everybody. I’ve seen here that some respond and start at 10 mg/day and others need 60 mg/day.

Best of wishes.

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@stonewheel

I had multiple blood clots in both of my lungs that were documented as a massive pulmonary embolism (PE). The event was called "unprovoked" and I was told that I was lucky to be alive. I heard whispering outside my ICU door about prednisone being a factor for why I had such a massive PE. Did your doctors say prednisone might be a contributing factor for your blood clot?

I usually say "long term" prednisone increases the risk of side effects. I'm beginning to think that "short term" prednisone isn't any better.
https://www.uspharmacist.com/article/shortterm-corticosteroids-increase-risk-for-range-of-conditions
I guess the overall risk is still very low but when a patient is one of the "unlucky ones" to have a serious side effect then the overall risk doesn't matter.
--------------------------------
I remember a self proclaimed "expert" on another forum saying that prednisone side effects are easy to manage. Obviously that expert never did patient care in a hospital.

It was also said that if I needed Prednisone for the rest of my life that was okay if it improved my quality of life. My life could have been shortened by 20 years when I had the PE. I have to admit my quality of life was pretty good on prednisone up until I had the PE.

Since my PE was so massive and unprovoked, I was told I would need to be on warfarin for the rest of my life. I took warfarin daily for about 15 years along with all my other cardiac medications.

A few years ago I was evaluated to see if I could switch to Eliquis instead of warfarin. I told my doctors that I was on high dose prednisone at the time of my PE but Actemra allowed me to taper off Prednisone. I was already off all my other cardiac medications. That was when it was decided that I didn't need any blood thinning medication anymore. Warfarin was stopped so my treatment wasn't lifelong. I have been able to survive 3 more years without warfarin and I haven't had any blood clots.

REPLY
Profile picture for stonewheel @stonewheel

@kjoed53 Hi. I think that you may need more mgs. of Prednisone per day, at least to begin with. My PCP diagnosed me and started me on 40 mgs. per day. (I’m a male, age 68, 177 lbs.) 20mg in the morning and 20mg 12 hours later.
In two days, I felt like Superman. PMR and all other arthritis pains magically vanished.

My PCP wanted me to begin taper down to 20mg per day, (that’s by half) which I was able to do within 3 weeks.

Note: I developed a side effect which I blame on Prednisone, a blood clot, and had to be hospitalized on 1/1/2026. Now I’m told that I must be on a blood thinner twice a day for the rest of my life.

That reaction hastened approval for Kevzara and I’m down to 7.5mg Prednisone and using Kevzara.

You might talk with your doctor about increasing a bit more Prednisone to see if it calms your PMR. If it does, after a week do your best to taper back down to the dosage that you are currently taking now. From there, consult with your doctor again about a plan for tapering down further.

I’m not a doctor so take my advice with a grain of salt. I’m saying what I would do if I were experiencing what you are experiencing, based on my experience.

PMR will respond to Prednisone. The amount of Prednisone required is different for everybody. I’ve seen here that some respond and start at 10 mg/day and others need 60 mg/day.

Best of wishes.

Jump to this post

@stonewheel
I'm having side effects from the prednisone including PVCs, HR of 10-15 more bpm, high BP, and high glucose. My cardiologist is increasing my meds to deal with the cardiac issues temporarily. I'd be okay to increase my pred to 30mg or adding methotrexate, which is sometimes used to help wean off prednisone.

REPLY
Profile picture for Mike @dadcue

@stonewheel

I had multiple blood clots in both of my lungs that were documented as a massive pulmonary embolism (PE). The event was called "unprovoked" and I was told that I was lucky to be alive. I heard whispering outside my ICU door about prednisone being a factor for why I had such a massive PE. Did your doctors say prednisone might be a contributing factor for your blood clot?

I usually say "long term" prednisone increases the risk of side effects. I'm beginning to think that "short term" prednisone isn't any better.
https://www.uspharmacist.com/article/shortterm-corticosteroids-increase-risk-for-range-of-conditions
I guess the overall risk is still very low but when a patient is one of the "unlucky ones" to have a serious side effect then the overall risk doesn't matter.
--------------------------------
I remember a self proclaimed "expert" on another forum saying that prednisone side effects are easy to manage. Obviously that expert never did patient care in a hospital.

It was also said that if I needed Prednisone for the rest of my life that was okay if it improved my quality of life. My life could have been shortened by 20 years when I had the PE. I have to admit my quality of life was pretty good on prednisone up until I had the PE.

Since my PE was so massive and unprovoked, I was told I would need to be on warfarin for the rest of my life. I took warfarin daily for about 15 years along with all my other cardiac medications.

A few years ago I was evaluated to see if I could switch to Eliquis instead of warfarin. I told my doctors that I was on high dose prednisone at the time of my PE but Actemra allowed me to taper off Prednisone. I was already off all my other cardiac medications. That was when it was decided that I didn't need any blood thinning medication anymore. Warfarin was stopped so my treatment wasn't lifelong. I have been able to survive 3 more years without warfarin and I haven't had any blood clots.

Jump to this post

@dadcue my DVT extended from my groin to ankle. I self-research discovered that Prednisone was linked to blood clots during the 72 hours before going to the ER. By their reactions, most had studied that it could, but not witnessed it in practice before me. That was the impression I gathered.

It did not take long. I consider five-six weeks to be short term, in this matter. I noticed other side effects in the short term also. Tingling and swelling feet and hands, irritability, increased appetite, brain fog, stomach irritation, severe herpes breakout on my bum, slow to heal cuts, bruise easily (I had never bruised before) thin skin, muscle weakness, vision change (which actually has been improved, go figure) and could not sleep. Note: I believe sleep is crucial with this disease (PMR.)

After the Heparin drip, I took to Eliquis well, they decided. Now, I bleed for days after a minor scratch. I had, all my life been a “no bleeder,” I scabbed almost instantly and moved on. Then, upon follow-up, my (now I have a hematologist) she told me I’d be on Warfarin for the rest of my life. I see her again mid-April. I shook my head “no,” thinking to myself, I’d rather stay on the Eliquis, if I have to continue with a blood thinner. And, I’d rather not. I wake up every morning and blood blood out of my nose, because of the blood thinner.

Eliquis and Prednisone are the same for me in this way, both keep me from having certain problems; but both have created more new problems. It’s a “benefits vs risks” thing for sure, for me.

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Profile picture for kjoed53 @kjoed53

@stonewheel
I'm having side effects from the prednisone including PVCs, HR of 10-15 more bpm, high BP, and high glucose. My cardiologist is increasing my meds to deal with the cardiac issues temporarily. I'd be okay to increase my pred to 30mg or adding methotrexate, which is sometimes used to help wean off prednisone.

Jump to this post

@kjoed53 I didn’t know your heart beat rate had increased, along with glucose (expected, mine has increased too but my PCP and rheumatologist seem ok with my level.) Somehow, my blood pressure has improved (my eyesight too, weird, I know) it had always been a bit high but now is in the normal range, go figure.

This is a bizarre disease!

If you can’t tolerate the pain, I’d up the Prednisone dosage for a few days to try for some relief. I could barely move and the pain kept me from sleeping. PCP started me on 40mg/day.
If you can tolerate the pain, (and there are some out there trying to outlast it taking nothing but Tylenol/Ibuprophen cocktails) stay on the lower dose and continue to manage the side effects.
For me, side effects are the new norm.
I wish you the best of wishes and luck k’53. Keep letting us know what you decide and how you are doing. We are all learning about PMR, including the doctors. God bless them.

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