Kevzara and Prednisone Tapering before and during Kevzara

I just started Kevzara, have had 2 injections . I am currently at 10mg/day. I have an appointment o Wednesday and will find my reduction schedule . Have had no side effects that I’m aware of. Hopefully it will help to get off prednisone as I’ve been on them since 2011 for PMR.

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1. What was your starting dosage of prednisone and how long have your been taking prednisone? Started on 20mg, 13 months ago.
2. What was your daily dose of prednisone before Kevzara? 10mg, and I was unable to go less w/o a flare.
3. What was your prednisone tapering schedule before starting Kevzara? 1 mg every 2-4 weeks.
4. What was your lowest dosage of prednisone before Kevzara and did you have difficulty dropping below that dose? 10mg, and I was unable to go below.
5. What is your tapering schedule now that you are on Kevzara? 1 MG month
6. How successful has this schedule been so far and have you had any flare ups? Going well so far. No setback flares, only manageable pain and stiffness around the time of drop that lessens with each Kevzara shot. (every 2 weeks)
7. What is your target date for stopping prednisone? June
8. What changes have you noticed in your health, aches and energy level since starting Kevzara? Minor abdominal rash for 1-2 days for the first couple of shots. Nothing afterwards, just prednisone reduction side effects like fatigue and stiffness, but lesser the lower I go.

I am starting Kevzara. I’ve been as high as 30 mg Prednisone when it first flared. I’m now at 5 and having major issues going lower. My rheumy prescribed twice monthly Kevzara injections. At the beginning of June, I will alternate between 4 and 5 mg Prednisone for a month, go to 4 for a month, then 4 and 3, etc. to see how low I can go. I’m on Medicare. They pay 80% of the costs of an injectable. Even the 20% which is my responsibility will be $1200 per month. I checked Kevzara’s co-pay program but those on Medicare/gov’t insurances do not quality. My Medicare Advantage plan does, however, offer a prescription payment plan for “catastrphic” drugs to even out the cost. Also, Medicare changed its requirements this year, one is responsible for a maximum of $2000 out-of-pocket for drug costs, which will also help.

Does kevzara really help? I’m on Actemra off label for over a yr , but it hasn’t replaced prednisone.

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.

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.

" 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."
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It seems to me that my IL-6 levels were causing all my problems since Actemra works well for me. It is strange that my IL-6 level has never been checked.

With all the emphasis of having a diagnosis to treat --- you would think they would want to know which cytokine to target and treat.

I assume they didn't test cytokines because there weren't many good alternatives to Actemra and Kevzara. I would think people who have the other kinds of cytokines more dominant would still get some relief from the biologic drugs, and could take less prednisone. The new drugs like Rinvoq for GCA might be a good alternative for people who don't respond well to Actemra. I've read there are several other new drugs in trials, so hopefully some of those would also be good alternatives.

I have asked my rheumatologist about targeting a cytokine and blocking it instead of treating a diagnosis. The explanation was that cytokines form a "communication network" complete with upstream and downstream regulation along with "crosstalk." He said there is no such thing as a single inflammation pathway that can be isolated and treated. He said it was more like turning down the cytokine that is the loudest versus blocking it completely. These pathways are interconnected and influence each other, making it challenging to isolate and treat a single pathway without affecting the others. It was a complicated explanation.

My rheumatologist was very animated about the topic but I didn't understand much of anything that he said. He also mentioned that Rinvoq might work because of how it regulates IL-6.

According to artificial intelligence --- "Rinvoq (upadacitinib) works by targeting the Janus kinase (JAK) pathway, which is involved in signaling for various inflammatory processes, including those influenced by cytokines like IL-6."
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I was absolutely devastated by the flare of uveitis that I had almost as soon as I was able to taper off Prednisone. It is after my cortisol level improved. My ophthalmologist insisted on starting Humira (TNF-inhibitor) instead of Actemra.

Humira along with 60 mg of Prednisone worked for the flare of uveitis. Unfortunately, I was stuck on 15 mg of Prednisone when I tried to taper off Prednisone again. My rheumatologist eventually conceded that it would be impossible to treat all my autoimmune conditions with a single medication. Since I couldn't be on two biologics, he told me to pick the biologic that worked the best so I chose to restart Actemra.