1. < Polymyalgia Rheumatica (PMR)

Just Started Actemra

Posted by sandiw77 @sandiw77, Aug 28 10:34am

I just wanted to share some info about my new treatment but wanted to give you a little history first. I was diagnosed with PMR in March 2022 and felt like 25 mg of Prednisone was a miracle. I was completely pain free and genuinely thought that I should cancel my retirement plans and work for another few years. That changed dramatically as soon as we started to taper my Prednisone dose. Even very small reductions (.5) seemed to be agonizing and after 2 + years I am still on 20 mg of Prednisone. Obviously, I needed a Biologic. I tried Kevzara but after 2 shots I ended up being taken off of it due to a side effect. I know that Kevzara and Actemra are very similar but my doctor decided to write a request to get insurance to approve Actemra for PMR treatment and it was approved. I had my first infusion yesterday and am praying for great improvement and no side effects so that I can finally get rid of Prednisone. After 1 infusion, I feel hopeful. Wish me luck! ❤️

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DadCue | @dadcue | Aug 28 11:34am

What was the side effect you had from the Kevzara injections?

I didn't have much success with tapering off Prednisone either until Actemra was started. To my knowledge, there is no "single best way" to taper off Prednisone. I was on Prednisone for 12 years so my taper was "painstakingly slow" with the emphasis on pain.

I sincerely hope the Actemra infusion works. I have not done Kevzara injections but I started with Actemra injections every other week. I had a good response to injections every other week but a better response to Actemra injections weekly. Part of the reason I started out slowly with less frequent injections was because my rheumatologist wanted to "play it safe."

I'm now doing a monthly infusion of Actemra. My initial infusion was more about tailoring my Actemra dose to my exact need and also to see how long I can go between infusions. Subjectively, I told my rheumatologist that the infusion of Actemra worked better than the injections. He was interested and he wondered how the injections compared to an infusion.

I don't worry too much about my infusion dose but my rheumatolgist says I don't get anywhere near the maximum recommended dose. I have gone 7 weeks between Actemra infusions but my inflammation markers ticked up along with some of my symptoms. My rheumatologist says we better stay with an infusion every 4 weeks.

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1 reply
sandiw77 | @sandiw77 | Aug 28 1:39pm
In reply to @dadcue "What was the side effect you had from the Kevzara injections? I didn't have much success..." + (show)
@dadcue

What was the side effect you had from the Kevzara injections?

I didn't have much success with tapering off Prednisone either until Actemra was started. To my knowledge, there is no "single best way" to taper off Prednisone. I was on Prednisone for 12 years so my taper was "painstakingly slow" with the emphasis on pain.

I sincerely hope the Actemra infusion works. I have not done Kevzara injections but I started with Actemra injections every other week. I had a good response to injections every other week but a better response to Actemra injections weekly. Part of the reason I started out slowly with less frequent injections was because my rheumatologist wanted to "play it safe."

I'm now doing a monthly infusion of Actemra. My initial infusion was more about tailoring my Actemra dose to my exact need and also to see how long I can go between infusions. Subjectively, I told my rheumatologist that the infusion of Actemra worked better than the injections. He was interested and he wondered how the injections compared to an infusion.

I don't worry too much about my infusion dose but my rheumatolgist says I don't get anywhere near the maximum recommended dose. I have gone 7 weeks between Actemra infusions but my inflammation markers ticked up along with some of my symptoms. My rheumatologist says we better stay with an infusion every 4 weeks.

Jump to this post

My Kevzara side effects were benign hepatic liver cysts. They were not positive that the Kevzara had caused them but we did know that I had abdominal pain that prompted the CT scan after Kevzara so the gastro insisted that we stop Kevzara. I will be taking the infusion ever 4 weeks and am praying for no side effects!

REPLY
1 reply
DadCue | @dadcue | Aug 28 1:54pm
In reply to @sandiw77 "My Kevzara side effects were benign hepatic liver cysts. They were not positive that the Kevzara..." + (show)
@sandiw77

My Kevzara side effects were benign hepatic liver cysts. They were not positive that the Kevzara had caused them but we did know that I had abdominal pain that prompted the CT scan after Kevzara so the gastro insisted that we stop Kevzara. I will be taking the infusion ever 4 weeks and am praying for no side effects!

Jump to this post

These kinds of things do worry me but I still want to be on Actemra and not on Prednisone.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10603956/

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1 reply
sandiw77 | @sandiw77 | Aug 28 4:23pm
In reply to @dadcue "These kinds of things do worry me but I still want to be on Actemra and..." + (show)
@dadcue

These kinds of things do worry me but I still want to be on Actemra and not on Prednisone.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10603956/

Jump to this post

I agree! I can definitely see where 2+ years of Prednisone has taken a toll on me and I am ready to reclaim my life. We’ll just have to believe that we’ve made the best decision for ourselves and side effects will be few!

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1 reply
jlo2252 | @jlo2252 | Aug 29 7:25am
In reply to @sandiw77 "I agree! I can definitely see where 2+ years of Prednisone has taken a toll on..." + (show)
@sandiw77

I agree! I can definitely see where 2+ years of Prednisone has taken a toll on me and I am ready to reclaim my life. We’ll just have to believe that we’ve made the best decision for ourselves and side effects will be few!

Jump to this post

@sandiw77
Hello Sandi,
I’m on hold at the moment because of other health issues I’m having but my doctor wants me on Actemra!
I have a long history of off/on prednisone use for a few health issues. Since getting PMR it has been difficult to taper.
My doctor is keeping me on 7.5 mg until I finally start my Actemra—he won’t increase even though I’m still having pain- so I just take my opioid pain reliever when needed, otherwise I take Tylenol ES, rapid release capsules.
Please keep us posted on how you are doing on the Actemra! I’m wishing you all good responses to this med!!

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redboat | @redboat | Sep 10 12:34pm

Good luck!

I've was on Actemra weekly injections for a year with minimal side effects and no relapses, then went to injections every two weeks, with even fewer side effects and no relapses.

I'm not on any other medications. I originally had a major inflammation event that is most consistent with PMR and/or Giant Cell Arteritis. I am a 65 year old male, otherwise in good shape.

It's Sept 2024 as I write, and I hope to get off Actemra at some point, maybe in the next several months, so I can be drug free in 2025.

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sandiw77 | @sandiw77 | Sep 10 5:47pm

Thanks @redboat! I am believing for good things! ❤️My inflammatory markers and pain seem to go right back up with the slightest Prednisone taper so hopefully Actemra is the sweet sauce and I will finally be able to get off of Prednisone after 2.5 years. Fingers crossed! 🤩

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