Actemra (Tocilizumab) to treat PMR??

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) group.

@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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I am currently on 15 mg. of Prednisone and also Methotrexate for my PMR.

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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.

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@mgrogers

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.

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Were you taking Actemra because of Covid or strictly for PMR symptoms?

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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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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?

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Has anyone had experience with using Biologics to put PMR into remission? Including Tocilizumab or any others?

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@suzorand

Has anyone had experience with using Biologics to put PMR into remission? Including Tocilizumab or any others?

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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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Thanks 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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@suzorand

Thanks 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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@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

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I was diagnosed with PMR in May 2016 & didn't want to take a corticosteroid like predisone or methylprednisolone. I wanted to take Actemra & read the Phase I trials which indicated it's preliminary successes in treating PMR (as well as GCA). However, finding a physician that would prescribe it was difficult. In the USA trial, Dr. Robert Spiera at HSS was the sponsor, so I went to him in July 2016. Initially, he wouldn't give me an Actemra prescription. He insisted that I do a very aggressive taper off the methylprednisolone, and of course the PMR returned. Then, without telling me, his first Actemra prescription was only for half the therapeutic dose. When I found out that I was taking only a half dose, I was furious. After taking the full half dose course, the PMR returned & only then, did he prescribe the full dose course that was used in the trials. After I had finished the full dose course of Actemra, the PMR disappear, however (1) year later I had a flare, and took another course of Actemra & have been in good health since then. In 2016-2017) my insurance didn't cover the drug & I had to pay cash for it, but Dr. Spiera sent in the 'prior authorization' paperwork, which knocked off about 1/3 of the price. I gave myself the injections at home. Actemra is clinically more efficient, in that it blocks the IL-6 receptors, whereas all oral corticosteroids do is is suppress the adrenal glands, lowering the cortisol level circulating in your body. Plus predisone/methylprednisolone is very deterimental to your body, depleting bone density mass and can damage tendons & ligaments. Hope this helps.

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I have have difficulty decreasing prednisone. As soon as I get below 10, my symptoms increase. I have tried Methotrexate and Leflunomide. The later has given me dizzy spells in the morning. My doc is now working on getting authorization for Actemra. I'm wondering what others have experienced. Thanks so much.

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