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Kevzara and Prednisone Tapering before and during Kevzara
Polymyalgia Rheumatica (PMR) | Last Active: May 26 11:05am | Replies (51)Comment receiving replies
Does kevzara really help? I’m on Actemra off label for over a yr , but it hasn’t replaced prednisone.
Replies to "Does kevzara really help? I’m on Actemra off label for over a yr , but it..."
I'm assuming your "off label" use of Actemra is for PMR since it isn't FDA approved for PMR. There is no guarantee that Actemra will work for everyone with PMR. The SEMAPHORE study reports 49% of patients in the Actemra group no longer needed Prednisone.
https://www.medpagetoday.com/rheumatology/generalrheumatology/100815#:~:text=About%20half%20of%20patients%20with,Brest%2C%20France%2C%20and%20colleagues.
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I was lucky to have tried Actemra for PMR. I was able to taper off Prednisone after about a year. Actemra takes about 3 months to be fully effective. I was able to taper from 10 mg to 3 mg of prednisone in 4 months. I had to stay on 3 mg for another 6 months because of secondary adrenal insufficiency which was a side effect from taking Prednisone for 12 years to treat PMR. Adrenal insufficiency could be one reason why Actemra isn't allowing you to taper off Prednisone.
After I tapered off prednisone I had a flare of another autoimmune disorder and needed to take Prednisone again. Having other conditions in addition to PMR may be another reason why you can't taper off Prednisone.
It is possible that you were misdiagnosed and you don't have PMR.
Maybe you do have PMR but Actemra doesn't work for you since IL-6 isn't your primary inflammation pathway.
Remember that half the people with PMR who were trialed on Actemra weren't able to taper off Prednisone. If you aren't able to taper off Prednisone ... have you been able to reduce your Prednisone dose substantially?
I have been Prednisone free for 4 years. Actemra has been extremely effective for me.
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You can google this information. There are different inflammatory substances that contribute to PMR and GCA. According to the Google search, "In Polymyalgia Rheumatica (PMR), key inflammatory substances include cytokines like IL-6, IL-1, and TNF-alpha. Elevated levels of inflammatory markers like erythrocyte sedimentation rate (ESR) and C-reactive protein (CRP) are also common. Other substances like glutamate and prostaglandin E2 (PGE2) may also contribute to pain in PMR. "
People with GCA and PMR have different mixes of these substances. Actemra and Kevzara both limit the effect of IL-6. So if someone's inflammation is mostly caused by IL-6, Actemra and Kevzara will be effective. I have GCA and PMR, and I have been taking prednisone for 11 months and Actemra for 10. I just stepped down on the prednisone to 3 mg per day, after starting at 60 originally. I haven't had any pain from the GCA or PMR since starting treatment. So it seems like my inflammation is mostly caused by IL-6.
It could be that if your inflammation if caused more by the other substances than IL-6, then you will have to keep taking prednisone until a more effective medication is approved.