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Anyone tried Actemra (Tocilizumab) to treat PMR? FDA approved for GCA
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.
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HugInterested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.
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@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/
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3 ReactionsI am currently on 15 mg. of Prednisone and also Methotrexate for my PMR.
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1 ReactionI 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.
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2 ReactionsWere 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?
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1 ReactionHello @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?
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1 ReactionHas anyone had experience with using Biologics to put PMR into remission? Including Tocilizumab or any others?
Hello @suzorand, Welcome to Connect. You will notice that we merged your post into an existing discussion on the same topic. My PMR is currently in remission and I don't have experience using biologics to treat my PMR when it was active. I did find some information that addresses the topic that you might find helpful until other members can share their experience with you.
-- "Can biologics treat PMR? - Despite an expanding field of targeted biologic therapies available for the treatment of inflammatory disorders, no biologic agents are recommended for the treatment of PMR. Sep 27, 2017" -- https://www.vasculitisfoundation.org/education/forms/polymyalgia-rheumatica/#1545067861996-ce2121ac-6499
-- 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/
Have you discussed using Tocilizumab or other biologics with your rheumatologist?
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1 ReactionThanks for your reply John. My rheumatologist has said a few times that I may end up using them in the future. I’m a very positive person and was thinking that I will find remission through the the normal treatments. After 14 months, recently tapering off and immediately having the pain return, I am back on 5 mg. of Prednisone. As I taper to 4 it’s getting bad again. So, I’m thinking it’s time for a serious discussion about the possible success of biologics and discussing the downside. I hope someone else has tried this and can add some personal insight.
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1 Reaction@suzorand - Another thing that might help PMR if you are not already doing it is diet and lifestyle changes. I think that is what helped me when my PMR came out of remission the second time and I was able to taper off of prednisone in a year and a half vs three and half years the first time around.
Polymyalgia rheumatica diet: Foods to eat and avoid: https://www.medicalnewstoday.com/articles/321683