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.

I started Kevzara mid December and I had infections in both eye lids soon after. Very hard to control. The skin infections and peeling started about the beginning of Feb. the skin cancer popped up in Jan. I have many other new skin bumps. Don’t know about the other meds available as yet.

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Hello all,
Several folks asked me to report on my Kevzara experience when I could, so here goes. PMR began for me overnight in November of 2022. I do not recall the initial dose but I do remember that it was extremely effective right from the start. I have felt zero side effects from prednisone use, and a dxa scan a month or two ago showed normal bone density. I was lucky.
I started Kevzara in November of 2023. At the time I was at 5 mg prednisone (a split dose) with the pain under control. By the time I got down to 2 mg I was in moderate pain and also had difficulty using my right hand due to "severe" carpal tunnel syndrome. I had that fixed and my rheumy in consultation with my surgeon decided to bump me up to 20 mg briefly, followed by a fast taper. When I was back down to 5 mg I went to a regimen in which every other Sunday I took my Kezvara and dropped one mg, and finally on March 27 I took my last 1-mg pill...touch wood. No pain at present aside from normal old guy stuff. Am I in remission? Is the next step a taper off the Kezvara? TBD! No side effects from the Kezvara. Again, lucky.
Attached is my plot of the last few months of this journey, although my spreadsheet goes all the way back to December of 2022. I have found the plot to be a useful tool for seeing how things are going. If anybody is interested in this approach let me know and I will send you the spreadsheet. Just erase my data in the table and put in yours...the plot updates automatically.
Good luck...to all of us.

Shared files

Prednisone Taper with Kevzara (Prednisone-Taper-with-Kevzara-2.pdf)

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@harelover

Just did my 4th injection of Kevzara with no ill effects. Currently on 5mg of Prednisone and will be for another two weeks which will be a total of 30 days since tapering from 7.5. I'm curious what others have experienced on Kevzara while tapering. What was the rate of taper for you on Kevzara? How long were you on it? Did you taper off completely and then continue the injections for a while. I have followed many of the posts who have tried Kevzara which have been helpful, but I was wondering if there are any additional folks that might be willing to share.

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I am finally off of Prednisone after 2 years! I still have manageable pain -probably aches and pains from older age (63). I have been on Kevzara since October. Went to RA last week, will begin taper off Kevzara in 6 months. She states there is no known good exit strategy as the drug is fairly new. She will be attending conference in May and will be learning more about this. Slow and steady most likely-just like everything else. My weight is also slowly decreasing….due to Prednisone no longer being needed.

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@froehlich22

I am finally off of Prednisone after 2 years! I still have manageable pain -probably aches and pains from older age (63). I have been on Kevzara since October. Went to RA last week, will begin taper off Kevzara in 6 months. She states there is no known good exit strategy as the drug is fairly new. She will be attending conference in May and will be learning more about this. Slow and steady most likely-just like everything else. My weight is also slowly decreasing….due to Prednisone no longer being needed.

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Love to hear that you have gotten off of Predisone. Sounds like Kevzara helped with your taper. How long were you on Kevzara when you finally got to 0mg. How much and how often did you taper?

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@froehlich22

I am finally off of Prednisone after 2 years! I still have manageable pain -probably aches and pains from older age (63). I have been on Kevzara since October. Went to RA last week, will begin taper off Kevzara in 6 months. She states there is no known good exit strategy as the drug is fairly new. She will be attending conference in May and will be learning more about this. Slow and steady most likely-just like everything else. My weight is also slowly decreasing….due to Prednisone no longer being needed.

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Do you have any idea of what your kevzara tapering schedule and dosage will be?

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I was on 16 mgs of prednisone since June 1st 2023, started Kevzara in July '23 and am currently at 20 mgs of prednisone due to a number of flares. Have tried tapering, got to 17mgs. but am back to 20 mg. So I have no idea if the Kevzara is doing anything!

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I've been on Kevzara for 3 months now so thought I would offer a report. Methotrexate seemed to stop working and also elevated my liver enzymes. I was at 6 mg prednisone and felt like I needed to go higher when I started the Kevzara. I stayed on the Kev for 6 weeks without tapering the pred and gradually started feeling better. I then tapered down to 5 mg pred at a .5 mg decrease every 3 weeks. The shoulder pain that has been my main symptom for the 3+ years I've had this disease is significantly improved. My shoulders feel looser. I have had some episodes of pain in the fronts of my thighs at 2-3 AM but not for over a week now. At my M.D. appt. yesterday I had labs done and my white cell count is below normal and one of my liver enzymes is still elevated slightly but has come down since I got off the methotrexate. He wants to see me in 4 months and in the meantime I am to try tapering the prednisone .5 mg/month. The abnormal labs concern me but I'm cautiously optimistic. I also will have to reapply for cost assistance on the Kevzara at the end of the year, so there are money worries with that drug. Overall I'm glad I'm giving it a try.

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@froehlich22

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.

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I am just starting on Kevzara and have been on 15 mg P now 12/5 and in two weeks I got to 10mg P. i have been on and off P for 10+ years. recently at 15 mg I felt great. The plan is to get me to 2.5 and maybe 0. I would be interested in other's histories of this process. What can I expect?

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@walkamok

Hello all,
Several folks asked me to report on my Kevzara experience when I could, so here goes. PMR began for me overnight in November of 2022. I do not recall the initial dose but I do remember that it was extremely effective right from the start. I have felt zero side effects from prednisone use, and a dxa scan a month or two ago showed normal bone density. I was lucky.
I started Kevzara in November of 2023. At the time I was at 5 mg prednisone (a split dose) with the pain under control. By the time I got down to 2 mg I was in moderate pain and also had difficulty using my right hand due to "severe" carpal tunnel syndrome. I had that fixed and my rheumy in consultation with my surgeon decided to bump me up to 20 mg briefly, followed by a fast taper. When I was back down to 5 mg I went to a regimen in which every other Sunday I took my Kezvara and dropped one mg, and finally on March 27 I took my last 1-mg pill...touch wood. No pain at present aside from normal old guy stuff. Am I in remission? Is the next step a taper off the Kezvara? TBD! No side effects from the Kezvara. Again, lucky.
Attached is my plot of the last few months of this journey, although my spreadsheet goes all the way back to December of 2022. I have found the plot to be a useful tool for seeing how things are going. If anybody is interested in this approach let me know and I will send you the spreadsheet. Just erase my data in the table and put in yours...the plot updates automatically.
Good luck...to all of us.

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Please let me thank you for a fine, detailed explaination of tapering P and using Kevzara. Just what I was looking for.

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