Actemra and prednisone

Hi @bunnykfl, I've had PMR twice and was able to taper off of prednisone both times but I don't have any experience with Actemra. While you wait for others to respond, you might want to scan through the other discussions and comments by members when searching for "Actemra and prednisone +remission" - https://connect.mayoclinic.org/search/?search=Actemra+and+prednisone+%2Bremission.

Do you mind sharing what current doses you are on and how long you have been dealing with PMR symptoms?

I have been dealing with PMR for about a year and I have been taking 5 mg prednisone for about 6 months. I am trying to get off the prednisone and am scheduled for Actemra soon.

PMR was my primary diagnosis and I was treated with daily prednisone for 12 years. I also had a 20 year "history of" a type of inflammatory arthritis called reactive arthritis with recurrent flares of uveitis. I needed Prednisone intermittently for 20 years prior to PMR being diagnosed but I never needed daily Prednisone for the other autoimmune disorders
https://versusarthritis.org/about-arthritis/conditions/reactive-arthritis/
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My starting daily dose of prednisone was 40 mg after PMR was diagnosed. I was able to decrease my Prednisone dose to 25 mg after 5 years and down to 15 mg after 10 years. I rarely got lower than 10 mg of prednisone. Many times PMR flared again at 7 mg of Prednisone and I needed to go back to 10 mg.

My PMR was said to be refractory but my rheumatologist didn't want me to take Prednisone for the rest of my life. Actemra was called my best chance of ever getting off Prednisone.

My first injection of Actemra was January 1st, 2019. I was able to taper off Prednisone before January 1st, 2020 while doing Actemra injections every 2 weeks.

I relapsed when supplies of Actemra were unavailable during Covid. The available supply of Actemra was diverted to treat seriously ill Covid patients. I needed 15 mg of Prednisone again until the supply of Actemra improved, While doing weekly injections of Actemra, I was able to discontinue Prednisone within 3 months the second time.

A monthly infusion of Actemra was ultimately started which I have done for the last 3 years. I have now been completely off prednisone for 3 years. My rheumatologist says I'm better off being on a monthly infusion of Actemra instead of prednisone.

There is another biologic medication call Kevzara that is FDA approved for PMR. Actemra is FDA approved for GCA.

Either Kevzara or Actemra should work the same for PMR. However, there is no guarantee either one will work. Is your doctor considering starting you on Actemra?

Yes. Starting Actemra next week. I hope to get off of prednisone.

Yes. I tapered down from 60 mg/day to no prednisone over several months while taking Actemra. It went very well, with no flares. I've been on Actemra for about a year with no noticeable side effects, although my blood work shows low C4 complement, which is common when being treated with it.