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 get free sharps containers as needed with my Actemra shipments. When the containers are full I close them up and throw them in the trash. I checked my town's website about used injector pens, and it said to put them in a sealed container such as a plastic bottle and put the container in the regular trash.
I get free sharps containers as needed with my Actemra shipments. When the containers are full I close them up and throw them in the trash. I checked my town's website about used injector pens, and it said to put them in a sealed container such as a plastic bottle and put the container in the regular trash.
I was wondering the same thing about disposing of sharps. Thanks for your input also! I just took my first KEVZARA dose with 12.5 Prednisone and also Methotrexate. Will taper down in 4 weeks as the KEVZARA kicks in.
On a side note, is it not weird that 2 other guys I personally know have PMR also? I was told PMR mainly occurs in females.
I just started on Kevzara for PMR. My WBC dropped and now my rheumatologist wants me to go from infusing every two weeks to every three weeks. I’m scared that she will pull the drug from me. I can’t take prednisone. Anyone else taking Kevzara
I just started on Kevzara for PMR. My WBC dropped and now my rheumatologist wants me to go from infusing every two weeks to every three weeks. I’m scared that she will pull the drug from me. I can’t take prednisone. Anyone else taking Kevzara
I'm not taking Kevzara but I have experienced neutropenia on Actemra. The more critical value is the Absolute Neutrophil Count (ANC) and not pecentage neutrophils. ANC is the crucial measure of infection-fighting white blood cells (neutrophils).
My neutropenia was transient and my ANC wasn't so low that I was at risk of an infection. You just need to wait and see what happens. Your doctor did the right thing going to an injection every 3 weeks. Adjusting the time between injections is sometimes all that is needed.
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The following link provides more details: https://pmc.ncbi.nlm.nih.gov/articles/PMC7376291/
"Decreased absolute neutrophil count (ANC) is observed within hours following administration of interleukin‐6 receptor (IL‐6R) inhibitors sarilumab and tocilizumab. This decrease is not associated with increased risk of infection. Emerging evidence suggests the effects of IL‐6R inhibitors on ANC are due to margination of circulating neutrophils into a rapidly mobilizable noncirculating pool without loss of function, rather than a decreased overall number of neutrophils in the body."
I'm not taking Kevzara but I have experienced neutropenia on Actemra. The more critical value is the Absolute Neutrophil Count (ANC) and not pecentage neutrophils. ANC is the crucial measure of infection-fighting white blood cells (neutrophils).
My neutropenia was transient and my ANC wasn't so low that I was at risk of an infection. You just need to wait and see what happens. Your doctor did the right thing going to an injection every 3 weeks. Adjusting the time between injections is sometimes all that is needed.
------------------------
The following link provides more details: https://pmc.ncbi.nlm.nih.gov/articles/PMC7376291/
"Decreased absolute neutrophil count (ANC) is observed within hours following administration of interleukin‐6 receptor (IL‐6R) inhibitors sarilumab and tocilizumab. This decrease is not associated with increased risk of infection. Emerging evidence suggests the effects of IL‐6R inhibitors on ANC are due to margination of circulating neutrophils into a rapidly mobilizable noncirculating pool without loss of function, rather than a decreased overall number of neutrophils in the body."
I can't thank you enough for your input. I'm new to this, having been recently diagnosed. I had a spinal fusion surgery before I knew I had PMR. I am not allowed to take prednisone because of it. So if the Kevzara doesn't work out,, I don't know what I will be able to take. Do you take any vitamin supplements like B12? I am just trying to do all I can to get to remission. Thank you again!
I can't thank you enough for your input. I'm new to this, having been recently diagnosed. I had a spinal fusion surgery before I knew I had PMR. I am not allowed to take prednisone because of it. So if the Kevzara doesn't work out,, I don't know what I will be able to take. Do you take any vitamin supplements like B12? I am just trying to do all I can to get to remission. Thank you again!
It doesn't matter if you are new or not. Your experience is unique and I would be very interested if Kevzara works for you.
I take a multivitamin but that dates back to when I was on Prednisone. Kevzara isn't known to deplete vitamins in the way Prednisone does.
I was able to taper off Prednisone about 4 years ago after Actemra was started. Kevzara should work in the same way that Actemra works. Neither Actemra or Kevzara work as fast as Prednisone works. It sometimes takes a few injections before you start to notice less pain.
How is your pain? What type of spinal fusion did you have? I was supposed to have a lumbar spinal fusion many years ago. At the time, the spine surgeon said the surgery would be very risky because I was taking so much Prednisone and I wasn't able to stop prednisone. Pain was going to be the "deciding factor" for going ahead with a lumbar fusion.
Now that I'm off Prednisone, the spine surgeon says I can do surgery whenever I'm ready. I honestly think Actemra is keeping the pain and inflammation in my lumbar spine under control. I don't want to do the lumbar fusion. However, I still have severe spinal stenosis.
I just started on Kevzara for PMR. My WBC dropped and now my rheumatologist wants me to go from infusing every two weeks to every three weeks. I’m scared that she will pull the drug from me. I can’t take prednisone. Anyone else taking Kevzara
I had what is called a minimally invasive spinal fusion of L3. He did the surgery through my left side, not my back. He removed the disc and inserted rods in my spine. The surgery took less than an hour and was very successful. I did not know I have PMR at the time. My surgeon does not want me to take prednisone because it could interfere with my healing. This is why I am upset if I have to go off the Kevzara because I don't have any other options.
I'm not taking Kevzara but I have experienced neutropenia on Actemra. The more critical value is the Absolute Neutrophil Count (ANC) and not pecentage neutrophils. ANC is the crucial measure of infection-fighting white blood cells (neutrophils).
My neutropenia was transient and my ANC wasn't so low that I was at risk of an infection. You just need to wait and see what happens. Your doctor did the right thing going to an injection every 3 weeks. Adjusting the time between injections is sometimes all that is needed.
------------------------
The following link provides more details: https://pmc.ncbi.nlm.nih.gov/articles/PMC7376291/
"Decreased absolute neutrophil count (ANC) is observed within hours following administration of interleukin‐6 receptor (IL‐6R) inhibitors sarilumab and tocilizumab. This decrease is not associated with increased risk of infection. Emerging evidence suggests the effects of IL‐6R inhibitors on ANC are due to margination of circulating neutrophils into a rapidly mobilizable noncirculating pool without loss of function, rather than a decreased overall number of neutrophils in the body."
I just started on Kevzara for PMR. My WBC dropped and now my rheumatologist wants me to go from infusing every two weeks to every three weeks. I’m scared that she will pull the drug from me. I can’t take prednisone. Anyone else taking Kevzara
Hi @ginnysiegel, Glad to see that you have already connected with @dadcue for your question. You will notice that we merged your discussion with another one on the same topic and changed the title a little to help others who may have some experience find the discussion - Any experiences with Kevzara (sarilumab)?: https://connect.mayoclinic.org/discussion/kevzara-experiences/. If you click the link it will take you to the beginning of the discussion where you can read through the other responses to the discussion.
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I get free sharps containers as needed with my Actemra shipments. When the containers are full I close them up and throw them in the trash. I checked my town's website about used injector pens, and it said to put them in a sealed container such as a plastic bottle and put the container in the regular trash.
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3 ReactionsThanks. I'll do the same.
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1 ReactionI was wondering the same thing about disposing of sharps. Thanks for your input also! I just took my first KEVZARA dose with 12.5 Prednisone and also Methotrexate. Will taper down in 4 weeks as the KEVZARA kicks in.
On a side note, is it not weird that 2 other guys I personally know have PMR also? I was told PMR mainly occurs in females.
I just started on Kevzara for PMR. My WBC dropped and now my rheumatologist wants me to go from infusing every two weeks to every three weeks. I’m scared that she will pull the drug from me. I can’t take prednisone. Anyone else taking Kevzara
I'm not taking Kevzara but I have experienced neutropenia on Actemra. The more critical value is the Absolute Neutrophil Count (ANC) and not pecentage neutrophils. ANC is the crucial measure of infection-fighting white blood cells (neutrophils).
My neutropenia was transient and my ANC wasn't so low that I was at risk of an infection. You just need to wait and see what happens. Your doctor did the right thing going to an injection every 3 weeks. Adjusting the time between injections is sometimes all that is needed.
------------------------
The following link provides more details:
https://pmc.ncbi.nlm.nih.gov/articles/PMC7376291/
"Decreased absolute neutrophil count (ANC) is observed within hours following administration of interleukin‐6 receptor (IL‐6R) inhibitors sarilumab and tocilizumab. This decrease is not associated with increased risk of infection. Emerging evidence suggests the effects of IL‐6R inhibitors on ANC are due to margination of circulating neutrophils into a rapidly mobilizable noncirculating pool without loss of function, rather than a decreased overall number of neutrophils in the body."
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4 ReactionsI can't thank you enough for your input. I'm new to this, having been recently diagnosed. I had a spinal fusion surgery before I knew I had PMR. I am not allowed to take prednisone because of it. So if the Kevzara doesn't work out,, I don't know what I will be able to take. Do you take any vitamin supplements like B12? I am just trying to do all I can to get to remission. Thank you again!
-
Like -
Helpful -
Hug
1 ReactionIt doesn't matter if you are new or not. Your experience is unique and I would be very interested if Kevzara works for you.
I take a multivitamin but that dates back to when I was on Prednisone. Kevzara isn't known to deplete vitamins in the way Prednisone does.
I was able to taper off Prednisone about 4 years ago after Actemra was started. Kevzara should work in the same way that Actemra works. Neither Actemra or Kevzara work as fast as Prednisone works. It sometimes takes a few injections before you start to notice less pain.
How is your pain? What type of spinal fusion did you have? I was supposed to have a lumbar spinal fusion many years ago. At the time, the spine surgeon said the surgery would be very risky because I was taking so much Prednisone and I wasn't able to stop prednisone. Pain was going to be the "deciding factor" for going ahead with a lumbar fusion.
Now that I'm off Prednisone, the spine surgeon says I can do surgery whenever I'm ready. I honestly think Actemra is keeping the pain and inflammation in my lumbar spine under control. I don't want to do the lumbar fusion. However, I still have severe spinal stenosis.
The following link has some information that compares Kevzara to Prednisone.
https://www.drugs.com/compare/kevzara-vs-prednisone#:~:text=Kevzara%20has%20an%20average%20rating,17%25%20reported%20a%20negative%20effect.
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2 ReactionsI had what is called a minimally invasive spinal fusion of L3. He did the surgery through my left side, not my back. He removed the disc and inserted rods in my spine. The surgery took less than an hour and was very successful. I did not know I have PMR at the time. My surgeon does not want me to take prednisone because it could interfere with my healing. This is why I am upset if I have to go off the Kevzara because I don't have any other options.
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1 ReactionYou offer the best information. Thank you.
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1 ReactionHi @ginnysiegel, Glad to see that you have already connected with @dadcue for your question. You will notice that we merged your discussion with another one on the same topic and changed the title a little to help others who may have some experience find the discussion - Any experiences with Kevzara (sarilumab)?: https://connect.mayoclinic.org/discussion/kevzara-experiences/. If you click the link it will take you to the beginning of the discussion where you can read through the other responses to the discussion.
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1 Reaction