1. < Polymyalgia Rheumatica (PMR)

Anyone tried Actemra (Tocilizumab) to treat PMR? FDA approved for GCA

Posted by DadCue @dadcue, Dec 29, 2020

I was diagnosed with PMR in 2007 which was in addition to reactive arthritis with recurring uveitis which was diagnosed in the early 1990's. I have taken prednisone daily since PMR was diagnosed. My average prednisone dose over the years was probably 25 mg daily and never less than 10 mg without having a severe flare. I have tried several DMARDs as steroid sparing agents but none of them worked well. I had given up hope that I would ever taper off prednisone.

Twelve years of prednisone has taken a toll and my rheumatologist would say my medical history is "complicated". With that in mind, my rheumatologist asked if I would be willing to try Actemra (Tocilizumab) which I started January 1st, 2019. The past two years have been even more complicated but I was prednisone free for most of 2020.

I would say PMR is in remission however I do have arthritic pain which I guess is due to reactive arthritis and aging. I also experienced a flare of uveitis which had been dormant during my PMR years when I was taking prednisone daily. My ophthalmologist prescribed Humira because she thought it would be a better biologic for uveitis. Actemra worked better for for the chronic pain I associate with PMR so I opted to go back on Actemra.

Has anyone else tried Actemra for PMR? It is only FDA approved for GCA.

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

trina24 | @trina24 | Apr 13 11:56am

I HAVE BEEN GETTING INFUSION OF ACTEMRA FOR ABOUT 3 MONTHS..IT HAS HELPED.BUT I DO NOT
KNOW HOW LONG I WILL BE ON IT..GLAD TO BE OFF PREDISONE.
TRINA

REPLY
trina24 | @trina24 | Apr 13 11:57am

I HAVE BEEN ON ACTEMRA INFUSION FOR ABOUT 3 MONTHS, IT HAS HELPED..GLAD TO BE OFF
PREDISIONE.TRINA

REPLY
papas | @papas | May 15 5:32am

Has anyone experience with Tocilizumab for GCA. I have been journeying with PMR for 2.5 years was at 1mg every other day. Over the course of 2 weeks the following happen - Retina specialist discovered 10% sight loss left eye, COVID 19 Booster 2 days later PMR neck/shoulder/hips pain returns. Rheumatologist prescribes methylprednisolone 48mg/day, starting 4/26 ,Bilateral Biopsy 5/15/24. Blood marks do not present serve numbers (has been the case for me) .
The plan after the Biopsy is to use Tocilizumab to wean me off methylprednisolone. The methylprednisolone was prescribed to try and reduce the bad mood swings I had with the 20-40mg dose of Predinsone 2.5 years ago (my wife states much improved) Any comment about Tocilizumab much appreciated.

REPLY
2 replies
Mentor
John, Volunteer Mentor | @johnbishop | May 15 4:31pm
In reply to @papas "Has anyone experience with Tocilizumab for GCA. I have been journeying with PMR for 2.5 years..." + (show)
@papas

Has anyone experience with Tocilizumab for GCA. I have been journeying with PMR for 2.5 years was at 1mg every other day. Over the course of 2 weeks the following happen - Retina specialist discovered 10% sight loss left eye, COVID 19 Booster 2 days later PMR neck/shoulder/hips pain returns. Rheumatologist prescribes methylprednisolone 48mg/day, starting 4/26 ,Bilateral Biopsy 5/15/24. Blood marks do not present serve numbers (has been the case for me) .
The plan after the Biopsy is to use Tocilizumab to wean me off methylprednisolone. The methylprednisolone was prescribed to try and reduce the bad mood swings I had with the 20-40mg dose of Predinsone 2.5 years ago (my wife states much improved) Any comment about Tocilizumab much appreciated.

Jump to this post

Hello @papas, You will notice that we merged your discussion into an existing discussion on the same topic so that you can learn what other members have shared. If you click the link below, it will take you to the beginning of the discussion.
--- Anyone tried Actemra (Tocilizumab) to treat PMR? FDA approved for GCA: https://connect.mayoclinic.org/discussion/actemra-tocilizumab-to-treat-pmr/

@dadcue, @suzorand, @lmoross and others may have some experience or suggestions for you.

REPLY
1 reply
papas | @papas | May 16 6:48am
In reply to @johnbishop "Hello @papas, You will notice that we merged your discussion into an existing discussion on the..." + (show)
@johnbishop

Hello @papas, You will notice that we merged your discussion into an existing discussion on the same topic so that you can learn what other members have shared. If you click the link below, it will take you to the beginning of the discussion.
--- Anyone tried Actemra (Tocilizumab) to treat PMR? FDA approved for GCA: https://connect.mayoclinic.org/discussion/actemra-tocilizumab-to-treat-pmr/

@dadcue, @suzorand, @lmoross and others may have some experience or suggestions for you.

Jump to this post

Thank you John, I read it all as I get ready for my Biopsy today. I am so grateful for all the contributors on this site willing to share their stories. It has and continues to help guide me as I navigate this crazy journey. I encourage anyone on this journey to also keep a daily log - it has been very helpful at medical appointments.

REPLY
khmc | @khmc | May 16 7:13am
In reply to @papas "Has anyone experience with Tocilizumab for GCA. I have been journeying with PMR for 2.5 years..." + (show)
@papas

Has anyone experience with Tocilizumab for GCA. I have been journeying with PMR for 2.5 years was at 1mg every other day. Over the course of 2 weeks the following happen - Retina specialist discovered 10% sight loss left eye, COVID 19 Booster 2 days later PMR neck/shoulder/hips pain returns. Rheumatologist prescribes methylprednisolone 48mg/day, starting 4/26 ,Bilateral Biopsy 5/15/24. Blood marks do not present serve numbers (has been the case for me) .
The plan after the Biopsy is to use Tocilizumab to wean me off methylprednisolone. The methylprednisolone was prescribed to try and reduce the bad mood swings I had with the 20-40mg dose of Predinsone 2.5 years ago (my wife states much improved) Any comment about Tocilizumab much appreciated.

Jump to this post

I have had Polymyalgia and GCA since Dec 2020.Started Actemra 03/21 ended Prednisone 11/21.I have also had multiple surgeries neck fusion 01/21 and complete right shoulder replacement 01/24. I am now down to one dose of Actemra every 29 days. I am free of pain and feel much better with the lower dose.

REPLY
trina24 | @trina24 | May 16 8:24am

I have been on Actemra infusion for 2 mo. It has helped
Trina

REPLY
trina24 | @trina24 | May 17 8:41am

Yes I have been on Actemra infusion for 3 months. It has helped.
Trina

REPLY
pattio172 | @pattio172 | May 19 4:55am

I just started with home injections as i titrate the prednisone.

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | May 19 7:23am
In reply to @pattio172 "I just started with home injections as i titrate the prednisone." + (show)
@pattio172

I just started with home injections as i titrate the prednisone.

Jump to this post

Hello @pattio172, Welcome to Connect. Do you have PMR and GCA? Do you mind sharing how long you have been on the prednisone?

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