Kevzara (sarilumab) to treat PMR

Thanks so much for your information. Little nervous about starting Actemra. I started having severe pain in April. Went to a rheumatologist in May and was diagnosed with PMR only. I don’t have any severe symptoms so maybe it was caught early. Anyway thanks so much for your input.

I was on prednisone for 12 years primarily for the treatment of PMR. I have multiple autoimmune disorders which my rheumatologist calls "systemic inflammation" or a "full range" of rheumatology problems.

Four years ago, I started doing Actemra injections every two weeks and tapered off prednisone in 7 months. I'm currently doing monthly Actemra infusions. I haven't had any side effects from Actemra other than slightly elevated liver enzymes and slightly low neutrophil counts.

I have stopped Actemra twice but my symptoms returned each time. My rheumatologist said the reason why my symptoms returned was because of "immune memory." Normally, the immune system develops a memory for pathogens foreign to the body. My rheumatologist thinks my immune system has developed a memory for attacking me.

I had many side effects during my 12 years of taking prednisone, My medication list grew from no medications to 12 medications for "prednisone related" side effects.

My medication list has shrunk since being on Actemra. I take a multivitamin which is optional. I still take 3 other medications that are "recommended" for residual prednisone related side effects. I also "need to take" warfarin for life because of a massive, multiple and bilateral pulmonary embolism. The "unprovoked" pulmonary embolism happened while I was taking prednisone. There was some discussion while I was intensive care that prednisone put me at a greater risk for cardiovascular events.

One advantage of Actemra is that you can stop it at any time for any infection or any side effect. I don't recall any infections during my 4 years while on Actemra alone. My side effects from Actemra are deemed to be minimal.

I started Actemra before the Covid epidemic. One of the reasons that I stopped Actemra was because supplies of Actemra were being diverted to seriously ill patients hospitalized with Covid.

I haven't ever tested positive for Covid. I wear a mask regularly but not as much lately.

One of the side effects of Actemra is an increased risk of a serious infection. I haven't needed to discontinue Actemra for any serious infection that I have had while on Actemra.

I recall having a knack for getting infections while on prednisone

Just took my first dose of Kevzara two days ago. Diagnosed in January 2023, on 15 mg prednisone, and tapering efforts only resulted in more pain. Still on 15 mg and pain varies from between 2/3 to 4/5.

Yesterday after my first shot it felt like I had been run over by a bus. PMR pain in arms and legs worse. Now a good 6. Anyone else have that happen? Hoping it is temporary.

I've had five shots and so far so good. Hopefully your body will get used to it.

Thanks for your update. My first shot was pushed back due to insurance issues. Finally approved so hoping to provide up date in a few weeks. Thanks again and glad reports about complications are negative so far. Thanks!

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.

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/

Thank you very much for your comments and the link. It has been a long process and I do want to be well educated of pros/cons before starting treatment. Your help is much appreciated.

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."

All these drugs seem to have that risk from infection.