Kevzara and Prednisone Tapering before and during Kevzara

Posted by mikeydee @mikeydee, Jul 3, 2023

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

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

Profile picture for laurelfagan @laurelfagan

I started Pred in July of last year when diagnosed with PMR. I started at 20 mgs. In August I started Kevzara injections every two weeks. I reduced Pred by 2.5mgs every two weeks. I was off Pred by the middle of November and have only been on Kevzara since Nov 17th. I have been doing an injection every 2 weeks until February then started to have trouble with my WBC and Absolute Neutriphils being two low. This is a side effect from Kevzara. I moved to once a month injections and doing great. Now we are moving the injection out to 5weeks, then 6 weeks, 7 week etc. Hoping no breakthrough pain and I can slowly get off all medication. My CRP and other tests have been normal. Hoping for the best.

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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?

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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.

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Profile picture for laurelfagan @laurelfagan

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.

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@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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I'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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