1. < Polymyalgia Rheumatica (PMR)

Kevzara

Posted by healthy56 @healthy56, Sep 14, 2024

I am curious about other’s experience with KEVZARA. I am currently taking 11 mg of Prednisone, down from 60 mg in April 2024. I am continuing to experience pain and stiffness daily, especially in the late evening and the morning. I am also fatigued most days. I am on an anti-inflammatory diet, walk daily and do a little restorative yoga. My Rheumatologist suggests going back up to 12.5 mg but I do not think that will be helpful as it will only lengthen the time I am on a drug that appears to not be helpful. She has suggested KEVZARA and we are now waiting on approval from my insurance company. My questions are: should I wait a bit and stay at 11 mg to see if anything changes (I have been on this dose for 4 weeks) before I start KEVZARA? Is it too soon in my treatment to start a biologic? It seems as tho my autoimmune system is not responding to the Prednisone or maybe I need more patience? My doctor was vague on these questions. Thank you in advance, I really appreciate this forum!

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wellsbjt | @wellsbjt | Feb 6 9:16am
In reply to @richardab "I have PMR and Smoldering Myeloma. My immune system has been raging for several weeks now...." + (show)
@richardab

I have PMR and Smoldering Myeloma. My immune system has been raging for several weeks now. Several SM tests have elevated. As my Penn Med oncologist said this a.m., it's a chicken and egg situation as to causes. He talked with my rheumatologist this am. after I talked with him and they want to try Kevzara to reduce my Prednisone dependency. I'm currently on 7 mg, trying to reduce 1 mg monthly.

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I started on Kevzara the first week of January and it has been a game changer. I have been able to taper the prednisone 1 mg per week after being stuck at 11 mg. And the muscle pain and fatigue are very manageable. I am now walking 30 - 40 minutes a day and taking a (mild) exercise class 3 times a weeks. I hope that Kevzara works as well for you. Good luck

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2 replies
tuckerp | @tuckerp | Feb 6 10:23am
In reply to @wellsbjt "I started on Kevzara the first week of January and it has been a game changer...." + (show)
@wellsbjt

I started on Kevzara the first week of January and it has been a game changer. I have been able to taper the prednisone 1 mg per week after being stuck at 11 mg. And the muscle pain and fatigue are very manageable. I am now walking 30 - 40 minutes a day and taking a (mild) exercise class 3 times a weeks. I hope that Kevzara works as well for you. Good luck

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thats interesting. I have seen where they say it can take up to 6 months for the injections to start to work. We are all so different.

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1 reply
richardab | @richardab | 6 days ago
In reply to @tuckerp "thats interesting. I have seen where they say it can take up to 6 months for..." + (show)
@tuckerp

thats interesting. I have seen where they say it can take up to 6 months for the injections to start to work. We are all so different.

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I've read it might take up to 12 weeks for it to start working with PMR (less with RA). As you say, we're all unique.

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1 reply
DadCue | @dadcue | 6 days ago
In reply to @richardab "I've read it might take up to 12 weeks for it to start working with PMR..." + (show)
@richardab

I've read it might take up to 12 weeks for it to start working with PMR (less with RA). As you say, we're all unique.

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It took about 12 weeks for Actemra to start working assuming Kevzara works the same as Actemra. I didn't know what to expect. My rheumatologist said I needed to take Actemra at least 3 months in order to give it a chance to work and for me to "notice a difference."

I can't say I noticed any difference while I was still on Prednisone except I could taper prednisone by 1 mg a week. I only tapered that quickly to get the "inevitable flare" over with. I wasn't sure if Actemra was working or not.

To my surprise, I didn't have a flare tapering Prednisone so quickly. However, I was told to stay on 3 mg of Prednisone because my cortisol level was too low to taper any lower. I had to stay on 3 mg for 6 months before being told my cortisol level was safe to discontinue Prednisone.

The astonishing thing was what an endocrinologist told me. As long as my cortisol level was adequate and if I didn't need Prednisone for PMR anymore, it was okay to discontinue Prednisone by going from 3 mg to zero without tapering. I did a fast taper going from 3 mg to zero in a week.

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neztrop | @neztrop | 5 days ago

I’ve been dealing with PMR since 10/25. High dose of Prednisone and tapering has been hard. So my Dr recommended Kevzara. I started yesterday. I work PT at a hospital and my Dr said no need to mask. I’m worried about infections. What are your thoughts/experiences.
On an aside not sure how much longer I can work. Tapering is quite difficult. Thanks in advance.

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1 reply
khof | @khof | 14 hours ago
In reply to @bcarr54 "Hello healthy56! I wouldn’t hesitate start KEVZARA. It has been a life changer for me. Early..." + (show)
@bcarr54

Hello healthy56!
I wouldn’t hesitate start KEVZARA. It has been a life changer for me. Early in 2022 I developed PMR and was on prednisone for 2-1/2 years. It took forever to wean myself off (cyling up and down dosage) when my rheumatologist suggested this biologic. I had no reservations as I was so desperate. And amazingly, it started working within 2 to 3 weeks. I have been off prednisone nine months and managing my PMR and RA with Kevzara. They will need to run complete blood panels and test you for tuberculosis before prescribing. Fortunately, my blood labs have continued to be absolutely perfect during this time, whereas on prednisone and many other drugs for RA, I had liver and numerous other deficits. In January 2024, while investigating prescription drug coverage, I found Aetna to be the best, requiring only $3200 out of pocket and the rest was written off. As you likely know, it’s a very expensive drug, but well worth it. I just turned 70 years old and I’m feeling like my 60-year-old self once again, FYI, I am an active, fit male Developed PMR early in 22, in June of that year I caught Covid (Vaccinated) then had long Covid for another year, eventually developing rheumatoid arthritis. I highly recommend KEZARA, and hopeful that it will continue working. Best of luck on your journey.

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I just started KEVZARA yesterday and thankfully no side effects so far! My question is how do you know when the KEVZARA starts to work? How do you know when it is okay to taper?
I started at 20 mg pred. in August 2024, got down to 9 mg, had 2 flares (pain), 2 sinus infections, diarrhea (starting in December and up to 20x a day. Ended up in ER with dehydration and am on Imodium daily) and Covid. I think most are the result of the prednisone. Two days ago I just found out I have cataracts in both eyes (prednisone). I'm currently at 14 mg.
I am so hopeful KEVZARA will help me get off this "devil drug"!.
Thanks!
Kim

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khof | @khof | 14 hours ago
In reply to @wellsbjt "I started on Kevzara the first week of January and it has been a game changer...." + (show)
@wellsbjt

I started on Kevzara the first week of January and it has been a game changer. I have been able to taper the prednisone 1 mg per week after being stuck at 11 mg. And the muscle pain and fatigue are very manageable. I am now walking 30 - 40 minutes a day and taking a (mild) exercise class 3 times a weeks. I hope that Kevzara works as well for you. Good luck

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This is made me so hopeful since I just started Kevzara!

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sandiw77 | @sandiw77 | 52 minutes ago
In reply to @neztrop "I’ve been dealing with PMR since 10/25. High dose of Prednisone and tapering has been hard...." + (show)
@neztrop

I’ve been dealing with PMR since 10/25. High dose of Prednisone and tapering has been hard. So my Dr recommended Kevzara. I started yesterday. I work PT at a hospital and my Dr said no need to mask. I’m worried about infections. What are your thoughts/experiences.
On an aside not sure how much longer I can work. Tapering is quite difficult. Thanks in advance.

Jump to this post

Hi @neztrop, I am so sorry to hear that you have had problems with tapering, but that you have started on Kevzara. I also had difficulty with tapering and am on Actemra due to suspected GCA. I have been taking weekly injections since mid December and I am starting to really feel the difference despite a two week period with no medication due to a pharmacy shipment issue. My doctor recommended that I hold tapering until the medication started to work and that I also delay when my shipment was missing. I think that was wise advice since tapering is counter productive when you are in active disease.

I definitely think you should mask, when in close contact with patients, when flu and Covid are active in your community. I ended up retiring earlier than anticipated (age 63) due to PMR pain. My daily waking pain was significant so I basically started over every morning. I have learned that stress also has an impact on the severity of the PMR symptoms so you must factor that in too. My husband strongly encouraged me to retire and we were in a financial position for me to make that leap earlier than anticipated. With the hiccups that I have had with tapering, I am grateful to have done that. I am praying that your answers are crystal clear and that you remain healthy to fully recover from PMR. Let us know what you decide and how you are progressing. Blessings! ❤️

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