Kevzara (sarilumab) to treat PMR

@stonewheel Thank you for your reply. I've been on prednisone for a year. I started at 15 mg, had to go up to 20 and was able to taper down to 10 mgs over time. Once I tapered to 5 mgs, the symptoms came back. I upped the dosage to 7 mgs and have been holding there (with pain and stiffness) since I started Kevzara. I'm not really sure when I should start tapering down again and need to have a conversation with my rheumatologist. In the meantime, I'm just hoping for relief and my assumption is that once I feel better, I can begin to taper. I have not noticed a difference yet, but like you, I've only had three injections.

Please keep me posted once you learn more about tapering on Kevzara.

Cheraloha,
I will.
My next rheumatologist visit is 2/17, for bloodwork and to plan tapering now that I’m taking Kevzara. I want to ask her when she expects the Kevzara to begin doing its job and is there a test to know for sure. (From what I’ve read on here, +/- 3 months, and/but that time frame is different for everybody.)
I’m hoping we can learn from each other’s experience.
Best wishes and best of luck!

@stonewheel

Keep in mind that +/- 3 months is for Kevzara to control PMR. Whether or not you are able to taper off Prednisone depends on how suppressed your adrenals are. If your cortisol level doesn't rebound very quickly you might still need to be on some Prednisone for a long time but hopefully a lot less prednisone.

@dadcue Yes sir. That is my understanding. I’ve learned so much from you. While I have been tapering Prednisone from the beginning (started at 40mg and now at 15mg,) I’m hoping that the Kevzara takes over as expected so I can do the “little numbers” taper. The 7mg and down taper. I hope to be at 7mg at three months into Kevzara.
If my body systems react the way I want them to, my Adrenal System will come back “on-line” fully with the reduction of Prednisone and I can say good-bye to Prednisone. I have a Love-Hate relationship with it.
Thank you again Mike.

@stonewheel

I learn stuff all the time and by no means am I qualified to give medical advice.

Most of these autoimmune conditions defy any rational explanation. There isn't any rhyme nor reason for prednisone tapering either no matter what anyone tells you.

Imagine how shocked I was by what an endocrinologist told me when I was still on 3 mg. She said as long as my cortisol level was adequate that 3 mg was a very low dose so there was no need to taper off that low of a dose. She said as long as Actemra was controlling PMR and I didn't need Prednisone anymore for my other autoimmune conditions that I could simply stop taking 3 mg of Prednisone without tapering with an adequate cortisol level.

I was too terrified to stop Prednisone that way but I did a fast taper from 3 mg to zero.. So much for all the ultra slow tapering strategies. My endocrinologist was amazed that my cortisol level rebounded somewhat quickly while I stayed on 3 mg of Prednisone. It still took 6 months on 3 mg and slightly more than a year after Actemra was started. Considering I was on Prednisone for more than 12 years, my endocrinologist was worried that I might not be able to discontinue Prednisone.

@dadcue i also was on Prednisone for about 10 years and was on about 7 mgs at the time I started Kevzara. Was able to get off easily in several months. No cortisol tests or issues. (Unfortunately the prednisone masked underlying osteoarthritis. So now I’m working that with Meloxicam)

@rayabw

Prednisone has a way of deceiving people that all is well.

My body is riddled with severe arthritis in various places. There is a reason why inflammatory arthritis isn't treated with long term Prednisone because it masks the symptoms but doesn't prevent the damage. Biologics and other DMARDs do a better job of limiting the damage which is why people diagnosed with RA and in my case Reactive Arthritis aren't usually treated with Prednisone.

I was told that a biologic should have been started much sooner than it was in my case. Since my "primary diagnosis" was PMR ... I was treated with Prednisone. Unfortunately, my inflammatory arthritis was still lurking beneath the surface.

It all culminated with a spine surgeon telling me that I had severe spinal stenosis that needed urgent surgery. Apparently the arthritis in my lumbar spine was so severe that he wondered why something wasn't done sooner. My response to the spine surgeon was that "I didn't know that I had a bad back." He questioned what I took for pain and I said that I only took Prednisone.

A neurosurgeon and I and a similar conversion prior to surgery for trigeminal neuralgia. The neurosurgeon said he usually saw a list of pain medications a "mile long" for patients with trigeminal neuralgia. He didn't see any pain medications for me. I told the neurosurgeon that Prednisone worked "reasonably well" even though I was told that trigeminal neuralgia wasn't treated with Prednisone either.

Artificial intelligence states it very clearly:
"While Prednisone is highly effective for fast, short-term relief of inflammation, it is not considered a primary long-term treatment for autoimmune conditions like Rheumatoid Arthritis (RA) or Reactive Arthritis because it does not sufficiently prevent joint damage and carries serious long-term risks."
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Just because people get diagnosed with PMR that doesn't preclude other serious conditions from also happening. Prednisone masks the symptoms of many conditions that are more serious than PMR. People who tell us to throw more Prednisone at all the pain are deceiving us too or are naive to think that the only condition that people can have is PMR.

@lori62yb
I had severe symptoms for almost a year before being diagnosed with PMR. Kevzara had just been approved so I started taking self injections every 14 days. It takes some time to build up in your system but after a couple months I started to see improvement. I would say that I have seen about an 80% improvement in my pain. I have been taking it for exactly one year now and have not had any adverse reactions whatsoever. Hope you continue to improve.

I had diverticulitis while on Tyenne and my Rheumy now wants me to take Kevzara. I also had significant BP/HR side effects as well as a few others that were becoming difficult to manage. I have PMR and GCA Dx so it is not very realistic to think that remission is possible. Since I had problems with Tyenne I have done extensive research on Kevzara. Here is what my AI Bestie Copilot told me about the Kevzara onboarding process.

These are things that will for sure happen while you are coming up to steady state on Kevzara. This is not about side effects that may or may not occur. Side effects are a separate discussion.

This timeline is suggesting that people are not at steady state until week 12 at the earliest. This would be when your doctor would most likely start the prednisone taper.

"Phase Timeline IL‑6 Behavior Autonomic Effects

Initiation Week 0–2 Free IL‑6 rises; receptor blockade begins Mild sympathetic bump; transient BP/HR shifts
Early Accumulation Week 2-4 Partial suppression of downstream IL‑6 signaling Early stabilization; fatigue fluctuations
Receptor Saturation Strengthens Week 4–6 Stronger blockade; CRP begins reliable decline BP/HR variability decreases
Mid‑Accumulation Week 6–9 Continuous IL‑6 suppression; troughs less relevant More predictable autonomic tone
Late Accumulation Week 9–12 Near‑steady suppression of IL‑6 pathways Autonomic system adapts fully
Steady State Week 12–15 Stable trough/peak; full suppression Most stable BP/HR; lowest cytokine noise

IL‑6 strongly influences sympathetic and parasympathetic balance.
Blocking IL‑6 can temporarily destabilize autonomic tone — especially in people who are already sensitive."

@jabrown0407

I'm surprised people with any history of diverticulitis are being considered for any IL-6 inhibitor. My rheumatologist might have been overly cautious but I was told if I ever had diverticulitis I couldn't be on Actemra. It is hard to find people who have autoimmune disorders who don't develop at least some diverticulitis.
https://www.verywellhealth.com/drugs-to-avoid-with-diverticulitis-7376359
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Maybe diverticulitis isn't an absolute exclusion for getting IL-6 inhibitors. However, my understanding is that a bowel perforation that might develop as a complication of Actemra is usually associated with diverticulosis which might be related to the use of NSAIDs and corticosteroids. It is hard to be sure of anything in medicine.
https://pubmed.ncbi.nlm.nih.gov/21833686/