Diagnosed with PMR in 2011. Many flares. Started KEVZARA in December. With prednisone at 10mg/day. I’ve reduced to 0/day now. Twice my wbc has been low. Last few months more infections. Ear/sinus/ cold sores. Will test my wbc again in a couple weeks and see what my rheumatologist says.
Congratulations for tapering off Prednisone. I hope you can stay off Prednisone.
I was on Prednisone for 12 years to treat PMR until I was able to taper off with help from Actemra. It was a bumpy road for me too including low neutrophil counts. My counts were low but my absolute neutrophil count (ANC) was the more critical value for fighting infections. When my ANC was somewhat low ... the recommendation is to skip one injection rather than discontinue treatment permanently.
My difficulties mostly happened when I was still on Prednisone along with Actemra. When I finally got off Prednisone my labs normalized and I haven't had many problems since then. I think it was "too much immunosuppression" when I still needed some Prednisone before I was able to taper off. I'm on Actemra without Prednisone now and I don't seem to have any problems with any of my lab values that are being monitored.
Congratulations for tapering off Prednisone. I hope you can stay off Prednisone.
I was on Prednisone for 12 years to treat PMR until I was able to taper off with help from Actemra. It was a bumpy road for me too including low neutrophil counts. My counts were low but my absolute neutrophil count (ANC) was the more critical value for fighting infections. When my ANC was somewhat low ... the recommendation is to skip one injection rather than discontinue treatment permanently.
My difficulties mostly happened when I was still on Prednisone along with Actemra. When I finally got off Prednisone my labs normalized and I haven't had many problems since then. I think it was "too much immunosuppression" when I still needed some Prednisone before I was able to taper off. I'm on Actemra without Prednisone now and I don't seem to have any problems with any of my lab values that are being monitored.
I am lucky that I have two completely separate and independent health insurances: BCBS PPO and TriCare4Life. So what one insurance doesn't pay the other will. BSBS PPO pays all but $75 and TriCare pays the rest.
I did this so you can read previous posts and connect with members like @dadcue@elizterrel@jfannarbor@linda7@grumpa, who can share their experiences and how long they were on treatment with Kevzara.
I did this so you can read previous posts and connect with members like @dadcue@elizterrel@jfannarbor@linda7@grumpa, who can share their experiences and how long they were on treatment with Kevzara.
My insurance company just approved me for year 2. I'm down to 3 mg/day of Prednisone. Id like to get off the Prednisone completely. I'm taking a break now and enjoying stability but as I haven't seen any new benefits lately and haven't gotten worse, unless I overdo the exercising, I'll start the Dead Slow Drop again soon and try to reduce further.
I have been self-injecting Kevzara for 10 weeks now (1/2 weeks). My thoughts:
* I started when I was on 5 mg Prednisone one day, 4 the next as it had become difficult to reduce down further without the PMR flaring.
* The injections are simple to do. There are You Tube videos on it and the company sends printed instructions. The drug is loaded in a pen which self-injects with a slight pressure against your body.
* It took until the 3rd injection to start having effects. The associated PMR symptoms of leg and upper body pains have mostly disappeared. I’m not taking supplemental anti-inflammatories any longer for continuing pains after taking my Prednisone.
* Sometimes it seems as if the Kevzara wears off by day 12 or 13 after an injection but the bodily symptoms are still fairly mild. It takes about 24 hours after an injection for the medicine to kick in.
* My doctor’s office would not take the used injection pens for proper disposal in their Sharps containers. I’m going to talk to the pharmacy dispensing the medicine for how to do so.
* The drug is expensive. The shots are $600 per with my insurance plan (Medicare and Medicare Advantage plans). However, for 2025, Medicare Part D drug costs have been capped at $2000 annually. Also, I was offered a prescription plan for catastrophic drugs in which I can pay $100 monthly for the costs I am responsible for.
*. I saw my rheumatologist yesterday and asked about the long-term plan. It is to get off Prednisone completely. She said we will probably continue the Kevzara after getting off Prednisone and lengthen the frequency of injections in the future.
I have been self-injecting Kevzara for 10 weeks now (1/2 weeks). My thoughts:
* I started when I was on 5 mg Prednisone one day, 4 the next as it had become difficult to reduce down further without the PMR flaring.
* The injections are simple to do. There are You Tube videos on it and the company sends printed instructions. The drug is loaded in a pen which self-injects with a slight pressure against your body.
* It took until the 3rd injection to start having effects. The associated PMR symptoms of leg and upper body pains have mostly disappeared. I’m not taking supplemental anti-inflammatories any longer for continuing pains after taking my Prednisone.
* Sometimes it seems as if the Kevzara wears off by day 12 or 13 after an injection but the bodily symptoms are still fairly mild. It takes about 24 hours after an injection for the medicine to kick in.
* My doctor’s office would not take the used injection pens for proper disposal in their Sharps containers. I’m going to talk to the pharmacy dispensing the medicine for how to do so.
* The drug is expensive. The shots are $600 per with my insurance plan (Medicare and Medicare Advantage plans). However, for 2025, Medicare Part D drug costs have been capped at $2000 annually. Also, I was offered a prescription plan for catastrophic drugs in which I can pay $100 monthly for the costs I am responsible for.
*. I saw my rheumatologist yesterday and asked about the long-term plan. It is to get off Prednisone completely. She said we will probably continue the Kevzara after getting off Prednisone and lengthen the frequency of injections in the future.
I forgot to mention. I was taking 4 mg Prednisone one day and 3 the next in August. I’m going to take 3 mg the rest of August and, if things continue as they have, will try reducing to 2 mg in September.
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Congratulations for tapering off Prednisone. I hope you can stay off Prednisone.
I was on Prednisone for 12 years to treat PMR until I was able to taper off with help from Actemra. It was a bumpy road for me too including low neutrophil counts. My counts were low but my absolute neutrophil count (ANC) was the more critical value for fighting infections. When my ANC was somewhat low ... the recommendation is to skip one injection rather than discontinue treatment permanently.
My difficulties mostly happened when I was still on Prednisone along with Actemra. When I finally got off Prednisone my labs normalized and I haven't had many problems since then. I think it was "too much immunosuppression" when I still needed some Prednisone before I was able to taper off. I'm on Actemra without Prednisone now and I don't seem to have any problems with any of my lab values that are being monitored.
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1 ReactionThank you.
I am lucky that I have two completely separate and independent health insurances: BCBS PPO and TriCare4Life. So what one insurance doesn't pay the other will. BSBS PPO pays all but $75 and TriCare pays the rest.
How long does a person stay on kevzara?
@garcia4277, I moved your question about how long do people typically stay on Kevzara (sarilumab) for polymyalgia rheumatica (PMR) to this discussion:
- Kevzara Experiences: What should I expect https://connect.mayoclinic.org/discussion/kevzara-experiences/
I did this so you can read previous posts and connect with members like @dadcue @elizterrel @jfannarbor @linda7 @grumpa, who can share their experiences and how long they were on treatment with Kevzara.
You may also be interested in this related discussion:
- Does Kevzara put PMR in to remission? https://connect.mayoclinic.org/discussion/does-kevzara-put-pmr-in-to-remission/
@garcia4277, when did you start Kevzara? Is it working for you?
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2 ReactionsMay 24 2025
I asked my rheumatologist that question. She said a year. But I’ll see what happens then.
My insurance company just approved me for year 2. I'm down to 3 mg/day of Prednisone. Id like to get off the Prednisone completely. I'm taking a break now and enjoying stability but as I haven't seen any new benefits lately and haven't gotten worse, unless I overdo the exercising, I'll start the Dead Slow Drop again soon and try to reduce further.
I have been self-injecting Kevzara for 10 weeks now (1/2 weeks). My thoughts:
* I started when I was on 5 mg Prednisone one day, 4 the next as it had become difficult to reduce down further without the PMR flaring.
* The injections are simple to do. There are You Tube videos on it and the company sends printed instructions. The drug is loaded in a pen which self-injects with a slight pressure against your body.
* It took until the 3rd injection to start having effects. The associated PMR symptoms of leg and upper body pains have mostly disappeared. I’m not taking supplemental anti-inflammatories any longer for continuing pains after taking my Prednisone.
* Sometimes it seems as if the Kevzara wears off by day 12 or 13 after an injection but the bodily symptoms are still fairly mild. It takes about 24 hours after an injection for the medicine to kick in.
* My doctor’s office would not take the used injection pens for proper disposal in their Sharps containers. I’m going to talk to the pharmacy dispensing the medicine for how to do so.
* The drug is expensive. The shots are $600 per with my insurance plan (Medicare and Medicare Advantage plans). However, for 2025, Medicare Part D drug costs have been capped at $2000 annually. Also, I was offered a prescription plan for catastrophic drugs in which I can pay $100 monthly for the costs I am responsible for.
*. I saw my rheumatologist yesterday and asked about the long-term plan. It is to get off Prednisone completely. She said we will probably continue the Kevzara after getting off Prednisone and lengthen the frequency of injections in the future.
Good luck on your journeys to get off Prednisone.
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5 ReactionsI forgot to mention. I was taking 4 mg Prednisone one day and 3 the next in August. I’m going to take 3 mg the rest of August and, if things continue as they have, will try reducing to 2 mg in September.