Kevzara (sarilumab) to treat PMR

@cheraloha

I think the "difference" is how how much faster you can taper down and hopefully off prednisone. For newly diagnosed PMR patients who have not started Prednisone, Kevzara might take 3 months to become fully effective. In order to "feel a difference" when a patient is already on Prednisone is more difficult because Prednisone should be controlling their symptoms.

The 3 months talked about is steroid-free, remission often documented around the 3-month (12-week) mark in clinical studies. These clinical studies tend to select "newly diagnosed PMR patients."

What isn't mentioned very often is 3 months to be "steroid free" is dependent on how long a person has been on Prednisone. The longer a person has taken Prednisone it becomes harder and harder to taper off prednisone. This is because of prednisone induced adrenal insufficiency. Some people may develop permanent (irreversible) adrenal insufficiency and they might never be able to taper off Prednisone. Fortunately, irreversible secondary adrenal insufficiency from long term Prednisone use is relatively rare.

I was on Prednisone for 12 years and it took me more than a year to taper off the first time and close to 2 years to become completely prednisone free. I had to stay on a 3 mg dose of Prednisone for more than 6 months just waiting for my cortisol level to improve.

Some of the symptoms I felt on lower doses of prednisone were caused by adrenal insufficiency and they weren't exactly PMR symptoms. However, symptoms of adrenal insufficiency and PMR can feel the same.

According to artificial intelligence:
"Adrenal insufficiency (AI) and Polymyalgia Rheumatica (PMR) share overlapping symptoms—notably extreme fatigue, muscle pain/weakness, and joint pain—making them difficult to distinguish, especially during steroid tapers."

@dadcue Thank you very much. This is very helpful. I've been on prednisone a year and just reduced back down to 6 mgs after having to increase back up to 10 due to a fast taper. Hopefully, I won't need to increase the dose again. I am hurting, but I hate prednisone, so it's a delicate dance as everyone who has dealt with this knows.

@cheraloha

It is amazing how often people experience flares at or about 7 mg of Prednisone. For me, it was the same and I called it my "7 mg barrier."

The "7 mg barrier" was a challenge for me because my symptoms always recurred at this dose. It didn't matter how slowly I tapered because I always flared. This dose is critical because it is the point where the body's natural adrenal function needs to ramp up the production of cortisol again. However, the adrenal glands have often become suppressed (or "slept") during higher-doses if prednisone. Taking more Prednisone at this dose put my adrenals back to sleep again.

That was the difference I experienced when a biologic was started. A biologic controlled my symptoms and didn't suppress my adrenal function. I was able to bust through the 7 mg barrier without a flare.
https://connect.mayoclinic.org/discussion/adrenal-insufficiency-and-tapering-prednisone/

@dadcue
Hi. Thank you for the information and links. Just went to rheumatologist on Friday, she is putting in the orders for Actemera as I show GCA on the aorta . We will see. Very hopeful.
Ellen D

@elleninz

It is all about being and staying hopeful.

When Actemra was offered to me, I was discouraged about trying it by so-called experts on the internet who said they were entitled to know how to treat PMR. Their entitlement stemmed from being on Prednisone for many years without being able to taper off. They were promoting elaborate tapering methods because they knew the best way to taper off Prednisone even though they could not taper off.

I was discouraged from taking Actemra because of one person who said it would be okay to take Prednisone for the rest of my life. I don't think it is wrong to take Prednisone forever but I don't think anyone should be discouraged from trying some alternatives,

@cheraloha I too have taken 3 Kevzara injections, as of 2/3/26. I'm at 15 mg of Prednisone. I’ve been on Prednisone for 3 months. I started with 40mg and started Kevzara at 20mg. Currently I am at 10mg. I’m wondering how fast to taper now that I’m on Kevzara. I see my Rheumatologist in ten days for bloodwork and to update her on my daily Prednisone amount. Do you have a new tapering plan?

Regarding injecting Kevzara: I'm on my 4th month of Kevzara and I have had maybe 5 instances of trying to inject Kevzara into my thigh and finding a puddle of medication on my skin after withdrawing the syringe. Has anyone had this experience? I tried my abdomen last time and this did not happen. The skin is thinner on my abdomen and I will use that site in the future. I am continuing to have mild to moderate shoulder/upper arm pain (nothing like the original excruciating pain) despite normal sed rate and CRP so maybe I have not been getting the full dose of Kevzara? Because of the normal blood tests, my rheumatologist attributes the pain to osteoarthritis but I did not have it prior to the onset of PMR. This is another question: what is the significance of pain in the absence of elevated inflammatory markers? I was put on Fosamax because of osteopenia secondary to prednisone. I have been off prednisone and methotrexate for about 3 months.

I forgot to mention that Fosamax can have musculoskeletal pain as a side effect.

@dadcue
I was nervous about tapering under the 10 mg mark ( as I was reading the issues people were having in the below 10 mg mark), but I was successful in reaching 1 mg without any additional pain level. After 5 mg I tapered 1 mg per 15 days ((which was when I started kevzara). I have not been on prednisone for more than 6 months so I attribute my success in the shorter term of steroids. I am grateful I started kevzara quickly in my treatment so as not to be dependent on prednisone and suffer the consequences of long term steroids. I have thin skin and osteoporosis and high blood sugar anyway so I’m not a good candidate for steroids.

@dadcue
Hi , I agree. The mental attitude is key. A bit nervous when I read the side effects. But I feel that I can’t do prednisone forever. I have tried at least three time to get to 3 mg. Everytime something comes up. So now that it shows up as GCA in aorta , it’s must be addressed. When I first got diagnosed in May 2023 , I was told to go on Kevzara. But I couldn’t pull the trigger So. Here I am. Thank you for your input.
Ellen DeFrancesco