Kevzara and Prednisone Tapering before and during Kevzara
I recently stated with Kevzara and I am interested in those who are currently on prednisone and Kevzara.
I would like to know...
1. What was your starting dosage of prednisone and how long have your been taking prednisone?
2. What was your daily dose of prednisone before Kevzara?
3. What was your prednisone tapering schedule before starting Kevzara?
4. What was your lowest dosage of prednisone before Kevzara and did you have difficulty dropping below that dose?
5. What is your tapering schedule now that you are on Kevzara?
6. How successful has this schedule been so far and have you had any flare ups?
7. What is your target date for stopping prednisone?
8. What changes have you noticed in your health, aches and energy level since starting Kevzara?
Please feel free to add any more information that might be helpful to those contemplating starting Kevzara or those currently on Kevzara
Thanks
Mike
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@laurelfagan Thanks for your post. I am on a similar course ( I hope) -- started Prednisone 20 mg in February, began Tyenne (tocilizumab) in April, reduced prednisone at the same rate, took last dose 2 days ago, so far so good. It's good to know that eventually I may be able to stretch out the Tyenne injections. Only side effect from Tyenne (so far) is more frequent bowel movements. Any tips on how to manage this from others on biologics?
That is great news. I have felt great on the Kevzara. When I was in the Pred my blood pressure climbed and I had to take Amlodapine. Then my lower legs started to swell and they took me off but I had stopped the Pred. I gained so much energy after stopping that drug. I thought my tiredness was coming from the PMR but it was the Amlodapine. I am concerned adding an extra week now on every injection that one day I am going to have a severe breakthrough in pain from PMR. But I guess realistically that might happen again.
@laurelfagan
Amlodipine and Losartan were two of the medications I stopped along with Hydrochlorothiazide. I was able to stop all my blood pressure medications one by one during the first couple of years after Prednisone was stopped. My blood pressure on Prednisone was sometimes more than 200/100.
https://connect.mayoclinic.org/discussion/blood-pressure-issues-while-on-prednisone/
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I had some serious cardiovascular problems when I took Prednisone. I'm off all my heart medications now. I also stopped warfarin but it was for an extensive, multiple and bilateral pulmonary embolism (PE) while I was taking prednisone. The PE was called idiopathic and "unprovoked" but there was a lot of whispering I heard about prednisone being the most likely cause.
I didn't realize that I had a massive PE. Prednisone might have made me have a false sense of well being. I was short of breath but that wasn't unusual because it was my "new normal" after PMR was diagnosed and being on a daily dose of prednisone.
I'm glad a young female doctor blocked the door of the urgent care center and would not let me leave until the ambulance arrived. I thought she was crazy but I was the crazy person.
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2 ReactionsI'm in the process of tapering down on prednisone from the 25mg I started in March to 7.5mg today. The fast taper was necessary because of an SMM diagnosis in May. I'm doing a 0.5mg decrease now every four days so that I can reach 5mg prednisone a week before my next, SMM blood work on Aug 4. I had the pre approval blood work for kevzara on Monday and the results just came back late today. My rheumatologist is starting the process for insurance approval for kevzara tomorrow. Hopefully that approval will come through by the end of next week.
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1 Reaction@villager I have had PMR for 5 years and on prednisone the entire time at different dosages depending on pain level
I started taking Actemra by infusion in October 2025 and am down to 3 mg of prednisone, however after last months treatment I started having bowel issues and belly pain. A trip to the ER on Tuesday got a diagnosis of acute diverticulitis. No more Actemra for me, now what
@tapamil65
Sorry to hear that. Were you ever diagnosed with diverticulosis before that?
Never. Every colonoscopy was clear and my gastrointestinal doc said she
wish all her patients had a healthy colon like mine. So the assumption
must be the Actemra. I looked up side effects of Actemra and if it could
be the cause and it is one of the side effects.
Any suggestions on what to try next. I see my rheumatologist on Monday
@tapamil65
It is hard to say what happens next. Diverticulosis doesn’t happen overnight so you probably had it and didn’t know it. When those pouches in the bowel become infected and inflamed that causes diverticulitis. They say diverticulitis is more likely when you are on both Kevzara and prednisone.
Kevzara is the easier medication to stop so you will probably have to stay on prednisone.
@dadcue
Thank you for the clarification Mike. I was oversimplifying the role of IL-6 with regards to PMR only. Yes, it is a “player” in other systems…
Indeed, human bodies (all life forms, simple and complex, actually) are incredibly intricate and involved. The study of which is fascinating to me. I am in awe, perpetually.
I like what the IL-6 “blocker” (saralumab) is doing for me with respect to PMR pain. However, I have to tolerate and monitor (adjusting if necessary) its effects on anc, wbc, and platelet count, just to name a few. But, for me, these being lowered is better than the side effects that I experience on Prednisone.
(The side effects from either could be deadly. Weigh the risks.) My choice is based on my personal view of life quality at my age. I’ve had an interesting life, every additional second is more than expected.
Ramble ramble…
I am choosing to push myself to my limits physically and mentally. My wife doesn’t understand it/my choices. But, I’ll explain it like this, like a firework, I’d rather go out in an explosion than a fizzle. And, I’m not interested in an audience. To each his/her own. Everybody is different.
I do appreciate your shares Mike, don’t stop, and wish you the very best.
@tapamil65
Biologics are not going to be a part of your future. I would guess they will try methotrexate, but I’m no doctor. I wish you well. Nothing fun about this disease.