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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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Gives me hope..thanks
Hi....Well I am following behind you. I was on leflunimide for a few days and got.sick and my.pain went off the charts. Now that was unexpected....so I called my rheumy and she thinks that possibly my RA be active along with PMR and that is why after months and months of pred I am still stuck in the low 20's. So I will get labs done and then set up the infusion. I feel hopeful.and nervous. Let me know how you do on it. I hope it is good for you.
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1 ReactionSo far so good..still weaning of pred ..hang in there
Interesting presentation about a study that was recently published in JAMA.
https://edhub.ama-assn.org/jn-learning/video-player/18724066
I was steroid dependent for almost 13 years with doses averaging about 20 mg the entire time. I rarely got below 10 mg. Actemra works for me and I have been off prednisone for almost 4 years. I still take Actemra for PMR but without serious side effects. My rheumtologist thinks I'm better off taking Actemra. I have other autoimmune problems besides PMR but all of them seem to be well controlled.
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4 ReactionsIt looks like I may be starting actemra infusions and would like to hear from those who have experience with it. Has it helped you? Have you been able to get off prednisone? Side effects? Thanks!
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1 ReactionHi @marid57, You will notice that we moved your post to an existing discussion on the same topic so that you can connect with other members with experience. If you click the following link it will take you to the beginning of the discussion so that you can read what others have shared.
--- Actemra (Tocilizumab) to treat PMR??: https://connect.mayoclinic.org/discussion/actemra-tocilizumab-to-treat-pmr/
You might also find this related discussion helpful.
--- How hard is it to get on Actemra (Tocilizumab) with PMR?: https://connect.mayoclinic.org/discussion/how-hard-is-it-to-get-on-actemra-tocilizumab-with-pmr/
@dadcue @mgrogers @labbadia1 @barb01001 and others hopefully can share their experience with you.
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1 ReactionA drop in the single digits of one mg is pretty big percentage-wise. Can you go down a .5mg drop by cutting a 1mg pill in half? I plan to do that and maybe go a bit longer than 30 days once I'm below 10mg.
I split 1 mg pills. Currently I take 1.5 mg a day. I split several pills at a time and keep a bottle of 1mg pills and .5 mg pills.
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2 ReactionsI have the 5mg and finally the 1mg. So far 5mg in the morning and 6mg in the evening is going well.
I also bought the otc Olly brand GABA & L-Theanine "Goodbye Stress" gummies and actually notice a difference. It isn't major but I didn't want to go rx as far as anxiety medication. The prednisone tends to elevate my heartrate a bit.
afternoon all,
I have been on Medrol 16mg, Exinef 90mg, and colchicine .5mg for the past 14 months, 4 weeks ago I was finally diagnosed with PM and AR. My IL6 count was 79,6. My rheumatologist suggested I go on Actemra. I received my 1st dose of injections today, however, sometimes being my own worst enemy I read up on the side effects of the drug and was wondering how many of you experienced the most common side effects.