Kevzara

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

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.

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.

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.

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.

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

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

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! ❤️

I am on 2 mg prednisone and Kevzara. I will be off Prednisone within next 20 days. I walk everyday and am very active. There are just days you need to relax and rest your body. Kevzara seems subtle but makes a big difference. My Doctor says I should be off Kevzara by June. I think it is definitely worth trying, I’ve not had any issues.

"I think that was wise advice since tapering is counter productive when you are in active disease."
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I agree with this and especially when prednisone doses are less than 5 mg. The adrenals also need time to start producing cortisol again. An endocrinologist told me not to consider tapering less than 3 mg when my cortisol level was too low. It was difficult to stay on 3 mg and not increase my prednisone dose. However, it was much easier with Actemra because I didn't have a flare.

There are two things to consider. 1) adrenal insufficiency caused by long term prednisone use and 2) a recurring flares of active disease. It is double trouble when our prednisone dose gets lower. Actemra made it easier for me --- it kept PMR in check and allowed me to stay on low dose prednisone long enough for my adrenals to recover.

For more than 12 years I tried to slowly taper off prednisone without Actemra and I had no success. When Actemra was tried it was much easier. Now Actemra keeps all my autoimmune conditions in check and I haven't needed any prednisone for 5 years. Actemra doesn't suppress my adrenal functions and no discernable side effects for me at least. Currently, remission is being maintained with a monthly infusion of Actemra instead of Prednisone. My endocrinologist thinks my adrenals have recoverd since I haven't needed Prednisone in a long time. I feel infinitely better being off Prednisone.