1. < Polymyalgia Rheumatica (PMR)

Starting treatment with Kevzara: My journey

Posted by edinnola @edinnola, Oct 5, 2023

Good morning everyone.
Well, yesterday was my first dose of Kevzara and day one of my taper down to 15mg of prednisone. We'll see how that works out. My doc prefers this medication over steroids. I'm very blessed that my insurance covered all the cost of this medication. I don't even want to know how much it is without insurance.
Now the main issue for me is: Why do I have splenomegaly (enlarged spleen). My doc did a CT scan because I have muscle wasting a bit more quickly than I should, and he stated that PMR could be a symptom of cancer. I get the results yesterday too (Not a great mental health day for me), and he referred me to Hematology. I asked if the PMR caused my enlarged spleen, or my enlarged spleen cause my PMR (I had a flashback to my Anatomy and Physiology classes on the spleen). He stated that he really didn't know. It's basically which came first, the chicken or the egg scenario.
Has anyone else experienced this?

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

kmb181 | @kmb181 | Apr 18 8:49am

Hi~
I am 55, and I have been dealing with PMR for about 9 years. I also have neck, and spine issues.
I have been on, and off Medrol, over the past 9 years. Every time I get off of Medrol, my inflammatory markers go back up with in 2-3 months.
Last year I tried injectable Methotrexate for about 6 months, but could not tolerate the side effects. It did however keep my markers down. But, I was also on Medrol while taking the injections.
I got Covid for the first time, right before Christmas last year (2023), and I have been battling a high CRP, and Sediment rate since. I just finished a 2 month Medrol taper, and my inflammatory markers are still high.
My Rheumatologist wants me to start on Kevzara. I have a lot of concerns, as my body is worn out, I do not tolerate meds well, and I have fatty liver from the long term Medrol use. I am also the person that if I get sick, I always get it bad. I feel like this could be opening up a new set of problems. But, I am most likely a PMR lifer, and I cannot stay on Medrol for ever. Especially with my neck, and spine issues. I also tore my meniscus in 3 places. Now I need knee surgery on my right knee, and left knee is right behind it. 🙄
Has anyone been on Kevzara for over a year, and had good results? What were your side effects?
Thank you,
Kathy 😊

REPLY
4 replies
Marilyn McFarland | @1942marilyne | Apr 18 9:27am
In reply to @kmb181 "Hi~ I am 55, and I have been dealing with PMR for about 9 years. I..." + (show)
@kmb181

Hi~
I am 55, and I have been dealing with PMR for about 9 years. I also have neck, and spine issues.
I have been on, and off Medrol, over the past 9 years. Every time I get off of Medrol, my inflammatory markers go back up with in 2-3 months.
Last year I tried injectable Methotrexate for about 6 months, but could not tolerate the side effects. It did however keep my markers down. But, I was also on Medrol while taking the injections.
I got Covid for the first time, right before Christmas last year (2023), and I have been battling a high CRP, and Sediment rate since. I just finished a 2 month Medrol taper, and my inflammatory markers are still high.
My Rheumatologist wants me to start on Kevzara. I have a lot of concerns, as my body is worn out, I do not tolerate meds well, and I have fatty liver from the long term Medrol use. I am also the person that if I get sick, I always get it bad. I feel like this could be opening up a new set of problems. But, I am most likely a PMR lifer, and I cannot stay on Medrol for ever. Especially with my neck, and spine issues. I also tore my meniscus in 3 places. Now I need knee surgery on my right knee, and left knee is right behind it. 🙄
Has anyone been on Kevzara for over a year, and had good results? What were your side effects?
Thank you,
Kathy 😊

Jump to this post

I am on prednisone 11 mg and have had PMR for 4 years

REPLY
Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Apr 18 10:02am
In reply to @kmb181 "Hi~ I am 55, and I have been dealing with PMR for about 9 years. I..." + (show)
@kmb181

Hi~
I am 55, and I have been dealing with PMR for about 9 years. I also have neck, and spine issues.
I have been on, and off Medrol, over the past 9 years. Every time I get off of Medrol, my inflammatory markers go back up with in 2-3 months.
Last year I tried injectable Methotrexate for about 6 months, but could not tolerate the side effects. It did however keep my markers down. But, I was also on Medrol while taking the injections.
I got Covid for the first time, right before Christmas last year (2023), and I have been battling a high CRP, and Sediment rate since. I just finished a 2 month Medrol taper, and my inflammatory markers are still high.
My Rheumatologist wants me to start on Kevzara. I have a lot of concerns, as my body is worn out, I do not tolerate meds well, and I have fatty liver from the long term Medrol use. I am also the person that if I get sick, I always get it bad. I feel like this could be opening up a new set of problems. But, I am most likely a PMR lifer, and I cannot stay on Medrol for ever. Especially with my neck, and spine issues. I also tore my meniscus in 3 places. Now I need knee surgery on my right knee, and left knee is right behind it. 🙄
Has anyone been on Kevzara for over a year, and had good results? What were your side effects?
Thank you,
Kathy 😊

Jump to this post

Hello @kmb181 - I moved your discussion and combined it with an existing discussion titled, "Starting treatment with Kevzara: My journey" - https://connect.mayoclinic.org/discussion/first-dose-of-kevzara/.

@edinnola, @wilmingtonemperor, and @paulagcl talked about their experiences with Kevzara and may be able to share some of their experiences with you as you weigh this new prescription decision.

REPLY
DadCue | @dadcue | Apr 18 11:00am
In reply to @kmb181 "Hi~ I am 55, and I have been dealing with PMR for about 9 years. I..." + (show)
@kmb181

Hi~
I am 55, and I have been dealing with PMR for about 9 years. I also have neck, and spine issues.
I have been on, and off Medrol, over the past 9 years. Every time I get off of Medrol, my inflammatory markers go back up with in 2-3 months.
Last year I tried injectable Methotrexate for about 6 months, but could not tolerate the side effects. It did however keep my markers down. But, I was also on Medrol while taking the injections.
I got Covid for the first time, right before Christmas last year (2023), and I have been battling a high CRP, and Sediment rate since. I just finished a 2 month Medrol taper, and my inflammatory markers are still high.
My Rheumatologist wants me to start on Kevzara. I have a lot of concerns, as my body is worn out, I do not tolerate meds well, and I have fatty liver from the long term Medrol use. I am also the person that if I get sick, I always get it bad. I feel like this could be opening up a new set of problems. But, I am most likely a PMR lifer, and I cannot stay on Medrol for ever. Especially with my neck, and spine issues. I also tore my meniscus in 3 places. Now I need knee surgery on my right knee, and left knee is right behind it. 🙄
Has anyone been on Kevzara for over a year, and had good results? What were your side effects?
Thank you,
Kathy 😊

Jump to this post

I don't have any experience with Kevzara but I have been on Actemra (tocilizumab) since January 1, 2019. Kevzara and Actemra are in the same classification of medications --- both are interleukin 6 (IL-6) inhibitors. They both have similar safety profiles.

I had excellent results from Actemra. I considered myself a PMR lifer of more than 12 years. I was a relatively young 52 year old when I was diagnosed with PMR. I was on moderately high doses of prednisone for nearly 13 years until Actemra allowed me to taper off prednisone. I might have mild lab abnormalities from Actemra but no serious side effects. My side effects from prednisone were much worse than any side effect I have experienced from Actemra.

Some people would say "better the devil you know than a risky biologic you don't know." For me prednisone was the devil while Actemra has been a blessing from heaven. My rheumatologist says Kevzara might be another option for me if Actemra ever stops working.

I don't consider myself a PMR lifer anymore. However, my treatment for PMR continues with Actemra instead of Prednisone. I do a monthly infusion of Actemra currently but I have done weekly injections in the past too.

REPLY
celia16 | @celia16 | Jul 16 2:01pm
In reply to @kmb181 "Hi~ I am 55, and I have been dealing with PMR for about 9 years. I..." + (show)
@kmb181

Hi~
I am 55, and I have been dealing with PMR for about 9 years. I also have neck, and spine issues.
I have been on, and off Medrol, over the past 9 years. Every time I get off of Medrol, my inflammatory markers go back up with in 2-3 months.
Last year I tried injectable Methotrexate for about 6 months, but could not tolerate the side effects. It did however keep my markers down. But, I was also on Medrol while taking the injections.
I got Covid for the first time, right before Christmas last year (2023), and I have been battling a high CRP, and Sediment rate since. I just finished a 2 month Medrol taper, and my inflammatory markers are still high.
My Rheumatologist wants me to start on Kevzara. I have a lot of concerns, as my body is worn out, I do not tolerate meds well, and I have fatty liver from the long term Medrol use. I am also the person that if I get sick, I always get it bad. I feel like this could be opening up a new set of problems. But, I am most likely a PMR lifer, and I cannot stay on Medrol for ever. Especially with my neck, and spine issues. I also tore my meniscus in 3 places. Now I need knee surgery on my right knee, and left knee is right behind it. 🙄
Has anyone been on Kevzara for over a year, and had good results? What were your side effects?
Thank you,
Kathy 😊

Jump to this post

How did your visit to Duke go? I read about that in one of your earlier post. I’m currently seeing Duke neurology with upcoming appointment with Rheumatology. My aunt was treated there for Lupus with a mixed opinion.

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