Kevzara and Prednisone Tapering before and during Kevzara

Excellent questions!!

Kevzara is FDA approved for PMR but not GCA.

Actemra is FDA approved for GCA but not PMR.

I would also ask if people are being treated for PMR, GCA or both PMR and GCA.

Actemra and Kevzara should work the same for either PMR or GCA. Both medications are IL-6 receptor blockers. Maybe include people who take Actemra too.

Good question you have raised. I would like the answer too.

I will try to answer your questions but I don't have any experience with Kevzara. My rheumatologist asked me if I wanted to try Actemra about 4 years ago to treat refractory PMR. I took prednisone daily for 12 years while my primary diagnosis was PMR. I have some other autoimmune disorders but Actemra was prescribed specifically for PMR.

1. What was your starting dosage of prednisone and how long have your been taking prednisone?------My starting dose was 40 mg of prednisone when PMR was first diagnosed. I reduced slowly to 30 mg after 5 years. I was still taking 20 mg after 10 years. At the 12 year mark my rheumatologist wanted me on the lowest prednisone dose that I could tolerate. I got down to 10 mg with pain and 15 mg without pain.

2. What was your daily dose of prednisone before Kevzara (Actemra)?----- 10 mg

3. What was your prednisone tapering schedule before starting Actemra? ----- It depended on how I felt. My rheumatologist wanted me down to 10 mg and then taper by 1 mg per month -- I relapsed whenever I tried to do that.

4. What was your lowest dosage of prednisone before Actemra and did you have difficulty dropping below that dose? ---- 7 mg was the lowest dose that I could maintain for any length of time. Anything lower than 7 mg resulted in what I described as a "pain crisis"

5. What is your tapering schedule now that you are on Actemra?----I have been off prednisone for the last 2 years. After Actemra was started, I tapered by 1 mg per month for the first 3 months. Then I tapered by 1 mg per week down to 3 mg. My rheumatologist told me to stop at 3 mg in order to be evaluated by an endocrinologist for adrenal insufficiency. I stayed on 3 mg for about 6 months until my cortisol level was "adequate." My endocrinologist told me to stop prednisone with some safeguards in place in case of an emergency.

6. How successful has this schedule been so far and have you had any flare ups? --- I flared within a week of stopping prednisone the first time. The flare wasn't a PMR flare but oneof my other autoimmune conditions flared. A diferent biologic (Humira) was tried along with 60 mg of prednisone again. I was able to decrease back to 15 mg but PMR returned and was getting worse. When Actemra was restarted and Humira was stopped, I tapered from 15 mg to zero in 2 months the second time. I continue with Actemra and haven't had any relapses for 2 years.

7. What is your target date for stopping prednisone?---- No target date was ever set. My rheumatologist didn't want me to take prednisone or the rest of my life. However, if it was 3 mg or less, that would have been acceptable. My rheumatologist was thrilled that I got to zero.

8. What changes have you noticed in your health, aches and energy level since starting Actemra? -- More energy is what I notice the most. I'm still not 100 mg compared to pre-PMR. I would have described my health as "excellent" before PMR even though I had other autoimmune conditions. I only took prednisone "short term" for my other autoimmune flares. Things went downhill quickly after about a year when I started to take prednisone on a "long term" basis for PMR.

Now that I'm off prednisone, I was able to stop 3 BP pills. I reduced a cholesterol medication to a very small dose. I don't take any other pain medication except for Actemra but my GP says Actemra isn't a pain medication. I still have some pain from severe spinal stenosis which is assumed to be degenerative arthritis. I think inflammatory arthritis more likely caused the problem. Prednisone isn't recommended for the treatment of inflammatory arthritis.

It was interesting that I developed a large synovial cyst that made the spinal stenosis worse. A neurosurgeon wanted to do surgery immediately but I wanted to wait to see if things improved. I was off Actemra when the synovial cyst developed. When Actemra was restarted the synovial cyst disappeared. A synovial cyst is usually caused by inflammation.

The synovial cyst went away but I still have severe spinal stenosis.

Sorry ... My energy level is still not 100%.

I got mg and % mixed up and I couldn't edit it before my time for editing expired. Why is there a time limit for editing?

Thanks for sharing, I too have had a cyst in the middle of my back for about three years, never bothered me but now it is inflamed and painful. Doctor put me on antibiotics and wants me to see surgeon when infection is under control. I’ve been on around 4mg of Pred for about five years.

I recently started Kevzara 11/23
I was diagnosed with PMR 7/22 my Pred dose was 20mg at diagnosis. I have tapered to 5mg which is the lowest dose I can tolerate to date. However I still am experiencing joint pain. I keep to this dose to ward off more weight gain. I have gained 30 lbs since 7/22. In 8/23 I accidentally lowered to a 1 mg dose mixing my pill containers for a week and had a Flare up that lasted a month+
I was at 5mg prednisone when starting Kevzara. I am still experiencing pain in my shoulders,
hips and knees joints. I am managing but not 💯 by any means.
I am going to see my Rheumatologist for my taper scheduled today. I am at 6weeks for both meds. I am a bit concerned about the taper due to my current pain level on both meds we shall see how it progresses and I will share. I did have one injection site issue a week or so after injection. No other notable side effects at this time.
I would be interested to hear what others experience and I will share what my doctor says as I go.

Hi; the Wilmingtonemperor here. I was diagnosed nearly a year ago with PMR. The highest dose for me was 20mg. I was put on a 12 week taper when I started Kevzara in October 23. I tapered down to 2.5 as my Kevzara injections built up.
Last Tuesday, Jan 9, I came off prednisone entirely. I have had 6 injections of Kevzara and I feel fine. Due for my 7th on Tuesday. I do not expect a flare since prednisone was such a low dose. But, always a but, you are immuno compromised on Kevzara and so make sure you have had all your vaccines, work out, eat right and stay out of unfamiliar crowds or wear a mask. I am 82 1/2 and hope not to ever take prednisone again. PMR is chronic.
Good luck

I have been on Kevzara since Oct. 2023. I have tapered very slowly as I have relapsed before. When I started Kevzara, I was on Prednisone 10mg and Methotrexate 17.5 mg. I am currently down to 3 mg of Prednisone and 7.5mg of Metho. The Kevzara has really made a difference but now I’m challenged with the price of it. I have Kevzara co-pay card and Optum RX insurance, but in December they charged me personally almost $1600 for the 2 doses. I am going round and round with both companies. I may not be able to take it anymore do to the cost. What a bummer. Just when you start feeling good again:-(. Has anyone else had trouble with the co-pay card or any advice? Thank you.

@mikeydee Hi there - do you plan to plot out all this data : ) that would be great !
i posted to the ACR meeting thread on Friday -- about the "great debate for PMR patients " -biologicals or not ?
https://connect.mayoclinic.org/comment/1012486/
After seeing @froehlich22 comment - i am surprised the COST of biological drug(s) was not part of the debate (as i recall) ! I have mentioned before that i actually changed my PART D Rx plan for 2024 in case i needed to take Kevzara. Prednisone is literally zero dollars !

All biologics are expensive and the cost of Kevzara is no different.

There is a loophole for biologics given by infusion for people on Medicare. As long as the biologic is FDA approved for the condition being treated, Medicare will pay 80% of the cost to do an infusion. A good Medicare supplement will pay the remaining 20%.

"Injectable and infused drugs: Medicare covers most injectable and infused drugs when a licensed medical provider gives them, because these types of drugs aren't usually self-administered."
https://www.medicare.gov/coverage/prescription-drugs-outpatient
An injectable biologic usually isn't covered because it isn't "medically necessary" for a licensed medical provider to administer them. However, an infusion needs a nurse or someone who is qualified to start an IV and give the medication.

Unfortunately, I don't think Kevzara is available by infusion. For people with GCA however, Actemra can be given by infusion.