1. < Polymyalgia Rheumatica (PMR)

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.

Mike | @dadcue | 2 days ago
In reply to @dadcue "I'm assuming your "off label" use of Actemra is for PMR since it isn't FDA approved..." + (show)
@dadcue

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.
--------------------------------
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.

Jump to this post

SEMAPHORE study:

"About half of patients with steroid-dependent polymyalgia rheumatica (PMR) were able to get off steroids altogether when they were started on tocilizumab (Actemra) infusions, which also improved disease control in most cases, a randomized phase III trial showed.

In a 24-week study, 49.0% of patients assigned to the interleukin (IL)-6 inhibitor were no longer taking prednisone at their final evaluation."
https://jamanetwork.com/journals/jama/fullarticle/2796378

REPLY
View MoreView Less
Please sign in or register to post a reply.