Kevzara

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.

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.

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?

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.

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

Remember Kevzara hasn't yet been in use for the first complete treatment cycle (1 to 2 years). I am in the first generation cohort of users.

The only reason I'm anticipated to have difficulty getting of Kevzara is if my PMR doesn't go into remission.

Also.my situation is a bit unusual. The Rheumatologist (a geriatric rheumatologist)'s practice is part of a hospital system with a medical school. They have a specialty pharmacy that handles all the Kevzara issues - I have a clinical pharmacist assigned to me; he calls me regularly to check on me, and answer questions about Kevzara. They manage the insurance authorizations, arrange delivery of Kevzara to my house, etc.

I've had to tinker and tweak the tapering ever since I dropped below 10 mg. And 5 mg was a real threshold into a new level of difficulty. I seem to need, and my Dr who is a rabid dog about getting me off Prednisone as long as I can function reasonably well while doing it, realizes that there is a need to allow time to destabilize at the new starting dose, whatever it is that I'm returning to - usually 5 mg. The last drops to 4 then 3 went surprisingly well. My personal lessons are: 1. Toggling between doses (like 5 mg and 4 mg) is helpful for a few days. 2. The 5 to 4 and 4 to 3 drops both seemed, in hindsight, to need a first trial that fails, then a pause at the higher dose for 3 weeks then a successful drop. 3. The 4 to 3 drop benefitted from my first effort with .5 mg doses - I dropped 4 to 3.5 mg for 3 days, felt the mounting symptoms and did a single day at 4 then BOOM dropped to 3 and didn't have any symptoms at all. I can only guess that my adrenal need a little bit of gentle jiggling and poking and shaking to cajole them into working harder.

"...allow time to STABILIZE NOT DESTABILIZE at the new starting dose...."

I felt like a pioneer 6 years ago when Actemra was tried. Even though biolgics have been around longer for the treatment of other autoimmune disorders, there aren't many people with PMR/GCA being treated with IL-6 inhibitors. Kevzara is newer than Actemra but Kevzara isn't that new for treating RA and other disorders.
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"The only reason I'm anticipated to have difficulty getting off Kevzara is if my PMR doesn't go into remission."

This is my dilemma at the moment. Now my doctors are making comments in my medical records that I never want to stop taking Actemra. I said that but in the context of not wanting to go back to the pain and needing Prednisone again. I seem to be in remission as long as I stay on Actemra.

Whether or not "lifelong Actemra" is any better than lifelong Prednisone -- I don't know. My rheumatologist seems to think so. For other autoimmune disorders, these biologics are used for as long as they continue to work. I worry more about what happens if Actemra stops working.

It is reassuring to know that Actemra can be stopped anytime but my rheumatologist doesn't want me to have to be on long term Prednisone again. He is already talking about other biologics that might work if Actemra stops working.