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Kevzara (sarilumab) to treat PMR

Polymyalgia Rheumatica (PMR) | Last Active: Apr 4 7:55pm | Replies (156)

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@ozblossom

After 15 months of prednisone/Medrol tapers I have failed both trials. Rheumatology recommending Kevzara (FDA approved for PMR) injections. Would appreciate anyone’s experience with this drug and cost after insurance (I have Medicare and supplemental) if you would be willing to share. Many thanks.

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Replies to "After 15 months of prednisone/Medrol tapers I have failed both trials. Rheumatology recommending Kevzara (FDA approved..."

I think it would be a wise to try Kevzara. I only have experience with a similar medication called Actemra which works on the same inflammation pathway. Both of these medications inhibit the pro inflammatory mechanism of the cytokine IL-6.

Cytokines are complicated as the following link suggests.

https://my.clevelandclinic.org/health/body/24585-cytokines#:~:text=Cytokines%20are%20essential%20to%20having,can%20be%20harmful%20without%20treatment.

Never mind all the details because I don't understand it either.

In any case, Actemra worked for me but the research to get Actemra approved to treat PMR hasn't been done. The research has been done for Kevzara and that is why it has been FDA approved for PMR but not GCA.

Actemra is FDA approved for GCA but not PMR. There is now a biologic for either PMR or GCA so take your pick.

Something other than long term prednisone for PMR and GCA is a huge step forward! This is especially true for someone who doesn't tolerate the long term side effects of prednisone.

I would think there is a place for biologics to treat PMR and GCA. As I understand it, both Actemra and Kevzara don't stop the production of IL-6. This cytokine has certain benefits in the immune system. Both Kevzara and Actemra seem to stop the pro-inflammatory effects of IL-6. This inflammation mechanism has been implicated in PMR and GCA and were used in the past for other autoimmune disorders.

Credit to whoever found the following link but I think it is excellent.

https://www.pmrandil6.com/il-6-and-pmr/

I should add that Medicare may not cover Kevzara injections. Injections are considered "outpatient medications" so you need a good drug plan that will cover the cost of medications that are self administered.

Medicare should cover 80% of the cost of monthly infusions of Kevzara. Your Medicare supplement should cover the remaining 20% of the cost.

Infusions are considered "inpatient medications" which are covered by the hospital portion of Medicare.

I believe the companies that make Kevzara and Actemra have programs to make these biologics more affordable. Since Kevzara is FDA approved for PMR, it should be covered by Medicare for the treatment of PMR if it is given by an infusion in a "hospital setting."

I found the site a little confusing as to where to post a new comment -- I just wrote in somewhere about suddenly waking up in pain when med dosage had been working fine.

I've been on it for three months and it seems to have helped -- they say it can take this long to start working. I have Medicare and a supplement and still there would have been a $1700 a month co-pay. I'm on a plan with the drug company to pick up the co-pay.

He started me on 20mg prednisone. I was feeling dizzy so he cut it back to 10. Meanwhile I was setting up getting the Kevzara paid for and ordered, so Istarted that about two weeks later, I think it was. The idea is to wean me off the cortisone. I am on 9 mg right now. So far so good and I finally got brave enough to give myself an injection--before that I kept going into the drs office until I could see his nurse was done with that!!!

This is hopeful! I am having some pain again now -- I didn't realize that there are ups and downs with inflammation so I am trying to stay calm. A headache.
I am grateful for this support group -- thanks to all of you. So here is some humor!!!! I am trying to follow the anti-inflammation diet, no red meat. So I just woke up having dreamt that I went to restaurant after restaurant ordering a steak! Thick, so a filet mignon. Medium rare. Perfectly grilled. One of the places was named the same as one my family went to when I was growing up in Miami -- the Embers. Now I am awake, craving a steak.

U

Been on 20 mg Prednisone sine Jan
Refused methotrexate and did not do well with Leflunomide
Have had 4 doses of Kevzara & down to 15.5 prednisone. No side affects and feeling “ a little “ better
SE from predisone most challenging. Medicare advantage paid for two doses then went into coverage gap. Approved for patient assistance from Kevzara

Has anyone with PMR using prednisone tried KEVZARA with any positive or negative results?

Hi @mrovka49, welcome to Mayo Clinic Connect. I moved your discussion and combined it with an existing discussion titled : PMR Treatment with Kevzara, https://connect.mayoclinic.org/discussion/pmr-treatment-w-kevzara/. Here you can meet members like @gmanurse, @ozblossom, and @paulagcl who have discussed their experience with KEVZARA.

@mrovka49, how are you doing while weaning from Prednisone while you wait to start a new medication?