Kevzara

Posted by healthy56 @healthy56, Sep 14, 2024

I am curious about other’s experience with KEVZARA. I am currently taking 11 mg of Prednisone, down from 60 mg in April 2024. I am continuing to experience pain and stiffness daily, especially in the late evening and the morning. I am also fatigued most days. I am on an anti-inflammatory diet, walk daily and do a little restorative yoga. My Rheumatologist suggests going back up to 12.5 mg but I do not think that will be helpful as it will only lengthen the time I am on a drug that appears to not be helpful. She has suggested KEVZARA and we are now waiting on approval from my insurance company. My questions are: should I wait a bit and stay at 11 mg to see if anything changes (I have been on this dose for 4 weeks) before I start KEVZARA? Is it too soon in my treatment to start a biologic? It seems as tho my autoimmune system is not responding to the Prednisone or maybe I need more patience? My doctor was vague on these questions. Thank you in advance, I really appreciate this forum!

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@aussiedogmom

He is much more concerned about my ability to get off Prednisone than Kevzara, and he views the side effects and long term risks of Prednisone as much more likely and more destructive than Kevzara. In his view, Kevzara's risks are serious but very infrequent. Comparatively, Prednisone 's risks are more numerous and more common and also quite serious.

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My rheumatologist feels exactly the same way. I have had PMR for 3 months and unable to taper to less than 20 mg per day without significant flares. Starting on Kevzara as soon as I get back to NJ from the Florida sun.

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@dmfulton

Did you have difficulty getting insurance to cover Kevzara?

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No problem with our insurance, which is an Aetna Advantage Medicare plan, but I believe it is very insurance dependent. Had an answer in just a few days.

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@aussiedogmom

While Prednisone is known for its dramatic results, I have to say that it's Kevzara that has given me my life back. I had the usual dramatic response to Prednisone then couldn't reduce further. Unlike most folks, my response to Kevzara was immediate and dramatic. Within days, I had less pain and greater mobility. Kevzara targets different receptors than Prednisone, and I believe my PMR is more affected by that pathway. If I'm late with a Kevzara dose, my body reminds me. Meanwhile, I'm dropping to 3 mg of Prednisone this week and expect to be down to 1 and off by summertime. My exercise tolerance is (slowly) increasing, sleep is improved, brain fog from pain is almost gone. I'm much better off by every measure to be on only Kevzara than Kevazara+Prednsone. Can't wait to lose this moonface & weight gain and get back to walking and hiking 3 to 5 miles daily.

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I have had a similar experience with Kevzara. I felt almost normal in a few days. I was also able to taper prednisone from 13 mg to 5 mg in less than 6 weeks. However, after the latest reduction to 5 mg this week, I am having sweats, headaches, nausea and fatigue. Although I have only been on steroids a few months, I guess the discomfort may be caused by my adrenal system trying to wake up. My question: what did your taper schedule look like once you reached 5 mg. ? Did you have to alter it from your earlier schedule?

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@aussiedogmom

He is much more concerned about my ability to get off Prednisone than Kevzara, and he views the side effects and long term risks of Prednisone as much more likely and more destructive than Kevzara. In his view, Kevzara's risks are serious but very infrequent. Comparatively, Prednisone 's risks are more numerous and more common and also quite serious.

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My rheumatologist said basically the same thing. I thought he had me confused for someone else when he said I was "too young" and "too healthy" to take prednisone for the rest of my life. I was 65 years old but I felt much older --- over 100. I took prednisone for 30 years already but daily for PMR for only 12 years. I didn't think the remaining years of my life would be very long.

Actemra gave me a new lease on life after I was finally able to taper off prednisone. My chronological age is how I currently feel. I'm 70 but getting to 90 seems feasible but 100 might be pushing it. I feel healthier as evidenced by 10 other medications in addition to Prednisone I have also stopped taking. Time will tell but I don't have the steroid burden or PMR anymore as long as I do a monthly Actemra infusion. The following study was funded by Genentech but other studies suggest the duration of PMR/GCA treated with Prednisone is much longer than 2 years.
https://pmc.ncbi.nlm.nih.gov/articles/PMC7991019/
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"The higher-than-anticipated number of patients with continued disease and exposure to glucocorticoids at 2 years suggests a more chronic nature of GCA and PMR in this real-world study rather than the existing expectation that GCA and PMR often resolve within 2 years of therapy. These results highlight the need to consider a potential long-term disease course in patients with GCA and/or PMR and for the use of efficacious, glucocorticoid-sparing therapies in these patients.
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Now my rheumatologist says it is clear that my overall condition is much better on Actemra. The turnaround happened within a year of getting off Prednisone. I had forgotten what it was like to really feel good again and not needing Prednisone every day.

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@dmfulton

Did you have difficulty getting insurance to cover Kevzara?

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My doctor's office handles that. I don't know. I have traditional Medicare and a supplement.

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