dadcue
@dadcue
@dadcue
Posts: 18
Joined: Jul 31, 2020
Actemra (Tocilizumab) to treat PMR??
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.
kimh
@kimh
@kimh
Posts: 252
Joined: Nov 15, 2017
I am currently on 15 mg. of Prednisone and also Methotrexate for my PMR.
Liked by John, Volunteer Mentor
dadcue
@dadcue
@dadcue
Posts: 18
Joined: Jul 31, 2020
I had Actemra Infusions monthly for 6 months, until this past October. The only side effect was bad body aches for about 24 hours. Unfortunately it did not work for me but helped others at my infusion clinic.
Were you taking Actemra because of Covid or strictly for PMR symptoms?
Hi there. I was diagnosed last year with PMR and just recently with GCA. I was very close to losing the sight in my left eye but caught it in time. I had been on 20mg of prednisone for the PMR but was bumped up to 80 to stop the inflammation in the optic nerve. I am now down to 30mg and have also started on Actemra. I am curious to hear of others' experience with this med and how it has worked for them. I am also having pain in my left leg from my hip clear down to my ankle which nothing seems to address the pain. My Rhumy seems to think it's a pinched nerve…I have my doubts. I am looking forward to tapering down the prednisone and getting off it entirely and I am also hoping the Actemra will put the PMR into remission as well. What a crazy disease!
I am convinced that it came on after I had a severe reaction to hair dye (I'm a retired hairdresser for 45 years) including anaphylaxis. I read that long term exposure to industrial chemicals could be a factor, although I am aware there is no "known" cause. Anyone having good results with Actemra?
John, Volunteer Mentor
@johnbishop
@johnbishop
Posts: 7761
Joined: Mar 22, 2016
Hello @cadi, Welcome to Mayo Clinic Connect. It's really good news that they caught the GCA in time to protect your eyesight. My PMR is in remission and I have no experience using Actemra so hopefully others in this discussion can share their experience with you. I was lucky that prednisone worked well to control both occurrences of PMR and the second episode only lasted 1-1/2 years. There is also another similar discussion for GCA that you might want to look at:
What's your experience with Actemra for GCA?: https://connect.mayoclinic.org/discussion/gca-1/
The one thing I found with both occurrences of PMR was tapering should be done slow and easy. It also helped me to keep a daily tapering pain level log so that I could look back when the pain would increase if I tried to taper too fast. Has your rheumatologist provided you with a tapering schedule?
Liked by Erika, Connect Moderator
@johnbishop
@dadcue, I have only used prednisone for my PMR and both times I was able to taper off prednisone. The first time it took 3-1/2 years, second time about 1-1/2 years. @marilyncarkner has posted about using Actemra in another discussion and may be able to share her experience. Here are a few articles I found on Actemra (Tocilizumab) used to treat PMR.
Tocilizumab Found Steroid-Sparing in PMR: https://www.medpagetoday.org/rheumatology/generalrheumatology/57894
Imaging Changes Examined in Tocilizumab-Treated Polymyalgia Rheumatica: https://www.rheumatologyadvisor.com/home/topics/research/imaging-changes-examined-in-tocilizumab-treated-polymyalgia-rheumatica/