Kevzara (sarilumab) to treat PMR

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.

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 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.

That was hope my rheumatologist gave me too about Actemra. That was before Kevzara was FDA approved for PMR.

My rheumatologist encouraged me to give Actemra a try about 4 years ago. The nice part about Actemra was that, unlike prednisone, Actemra can be stopped easily. My rheumatololgist assured me that Actemra could be stopped if it didn't work or the side effects were too severe. I certainly have NOT had any serious infections since being on Actemra but infections are still possible.

I started feeling better when Actemra kept the inflammation in check instead of prednisone. PMR flares haven't happened as long as I continue Actemra. It would be nice to be able to stop Actemra sometime in the future.

I was just fortunate to be able to taper off prednisone after taking it for 12 years to treat PMR. My adrenals were not working well when my cortisol level was checked. I had to taper down to 3 mg of prednisone in order to have my cortisol level checked. It took about a year for my cortisol level to increase and I was able to stop prednisone.

Cortisol is the hormone that regulates inflammation. The prednisone we take replaces the cortisol that the adrenals produce. Too much or too little cortisol is detrimental to the body. There was no way of knowing how much prednisone I needed at any given time.

Prednisone is a poor substitute for the cortisol our bodies produce and more importantly, how our cortisol levels are regulated by the HPA axis. There was no way for me to regulate how much cortisol I needed with the precision that the HPA axis regulates cortisol.
https://www.verywellhealth.com/hypothalamic-pituitary-adrenal-hpa-axis-5222557
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I was taking ten other medications to treat prednisone related side effects. Cortisol is a hormone that regulates many other things besides inflammation.
https://my.clevelandclinic.org/health/articles/22187-cortisol
Prednisone was regulating inflammation because of PMR but it caused many other things to become unregulated. Being off prednisone has allowed me to stop six of the medications I was taking to control my blood pressure, cholesterol level and a few other things.

My rheumatologist was diplomatic about the risk of infections from these medications. She said it was because of "too much immunosupression."

The goal of all these medications is to suppress the immune system. That is the treatment for autoimmune disorders. Prednisone might me the most potent immunosuppressive medication of them all which is why it works so well.

I'm on a biologic now and I was able to taper completely off prednisone. If my experience counts for anything, I haven't had a serious infection since being off prednisone. Yes, a serious infection is still a possibility.

How are you doing with Actemra? I think you were lucky to start Actemra as quickly as you did. I wish I could have tried Actemra much sooner.

Twelve years on prednisone with all the inherent risks and side effects of prednisone was a very long time. I'm not so sure managing the symptoms of PMR with long term prednisone and waiting for PMR to "burn itself out" is a good approach to the problem anymore.

When adrenal suppression starts to happen, it becomes more difficult to taper off prednisone. The slow taper that people are told to do when starting out on prednisone is because of the side effect of adrenal insufficiency. I believe when there isn't enough cortisol to regulate inflammation then the risk of a relapse increases. The symptoms of adrenal insufficiency also increase. Both conditions mimic each other.

I don't know how many of my symptoms were from PMR and how many symptoms were caused by adrenal insufficiency. I think it was a combination of both.

I have stopped Actema twice after I tapered off prednisone. My rheumatologist didn't exactly want to stop Actemra. The supply of Actemra during covid was limited and I couldn't get my prescription refilled. My rheumatologist said I could take prednisone again if I absolutely needed to. I held out as long as I could but I needed 15 mg again after about 3 months. I wouldn't call it a flare or at least not a sudden increase in symptoms. It was more of a gradually increase in pain as my inflammation markers crept higher.

I was only on 15 mg of prednisone again for about 2 months before Actemra was available again. I tapered down from 15 mg back to zero in less than 2 months that time.

I'm not sure my symptoms were PMR symptoms as much as my adrenals were having difficulty regulating inflammation. In any case, I felt I needed prednisone again. I joked with my rheumatologist that I was a prednisone junkie and I needed a cortisol fix.

I didn't realize how much adrenal insufficiency factored into the equation until Actemra allowed me to taper down to low dose prednisone. I kept telling myself that Actemra was controlling my PMR symptoms and I didn't need prednisone anymore. I had a hard time convincing myself but eventually I didn't need prednisone anymore.

Now I need to figure out how to wean myself off Actemra. My rheumatologist says I may have a problem with "immune system memory." He says the immune system develops a memory for things that are foreign to the body. The same thing happens with autoimmune disorders. The immune system can't distinguish my own tissues (good stuff) from the bad stuff. Unfortunately the immune system acquires a memory for the good stuff and may have develop a "long term memory" for attacking me or the good stuff. My rheumatologist says it isn't likely that my immune system will forget anytime soon what it has been attacking for so many years.

Maybe if remission could have been achieved sooner, my immune system wouldn't have a long term memory for attacking me. I might have a better chance for a long term remission.

Does this make sense?? I'm still trying to wrap my head around some of the things my rheumatologist says. I don't think there is anyway to knowing what will happen in regards to having a relapse. I'm more in a try it and see mode.

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.

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.

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!!!

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.