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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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@southtexas
My husband recently began weekly injections of Actemra for giant cell arteritis (GCA - diagnosed Feb 2024.) He had PMR first (diagnosed in May 2023). You mentioned you're not taking a biologic (Kevzara) because you're afraid of the cancer risks of biologics. Do you know how high the risk is?
The spondyloarthritis population is very large too.
https://pubmed.ncbi.nlm.nih.gov/32712723/#:~:text=But%20axSpA%2C%20that%20encompasses%20AS,RA%2C%20AS%2C%20and%20axSpA.There are several types of spondyloarthritis so collectively they might rival the RA population.
Interesting. I’ve only met One person with it.
I love these studies - clearly there is a lot of overlap and integration of symptoms and treatments. I had forgotten to also consider which bucket psoriatic was in.
Crohn's and inflammatory bowel disease are also part of the spondyloarthritis family of diseases.
https://www.arthritis.org/diseases/spondyloarthritis
I think the overlapping features of autoimmune diseases should fall under the umbrella of "systemic inflammation." That is what my rheumatologist said she was treating more than any one diagnosis.
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1 ReactionAh yea. Forgot about the bowel inflammatory collection.
Your Rheumy sounds like a good one.
I liked my rheumatologist at the University that I saw at my rheumatology visits for 12 years. I think she liked me too or at least she kept me as her patient for 12 years.
When I retired, I transferred my medical care to the VA across the street from the University. The VA system was hard for me to get used to because I saw a different rheumatologist at every visit. I wrote her a message asking if I could reestablish my care with her at the University. She wrote the following response back to me on EPIC.
"Mike, my advice is to stay at the VA. It may be the only way you will get Actemra, as it is now in short supply due to use for respiratory distress syndromes secondary to COVID-19. Also, the VA advantage is you can often get things well before they are "FDA-approved" which is NOT the case with Medicare. For instance, Actemra is not FDA-approved for PMR. Also, I cannot prescribe for you at the VA based on University visits. At your next VA visit, ask about being seen in the Friday Fellow's clinic. That way your provider only changes ~ every 2 years. One thought: Actemra works for one thing.... Humira for the other... ask them about a trial of Xeljanz (which also isn't FDA approved for either uveitis or PMR, but might work, and you would only be able to get it through the VA)."
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I took her advice and I went to the Friday Fellow's clinic at the VA. My doctors are still learning. The nice thing is my rheumatologist at the University oversees the Fellow's program. I think she is still keeping tabs on me.
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4 ReactionsI was diagnosed with PMR in July. I started on 60mg of Prednisone and then added a weekly shot of Actemra after a couple of weeks of starting the Prednisone. I have had really good luck with it and the plan is to completely get off of the Prednisone (now only taking 6 mgs) eventually and only using the Actemra.
About three months ago my doctor tried to fast track me off of Prednisone, that didn't work.
I do not experience any side effects from the Actemra. So I would recommend.
When you get a great one, you can sure tell the difference. I’d do almost anything to keep mine. I think his PharmD in addition to his MD is a big advantage in this disease.
Yes , I've been getting weekly injections of Actemra since December of 2020. For me it's been working really well. That's not to say that I'm symptom/ pain free, I'm also taking 3 mg of Prednisone daily. I've tried weaning of the Prednisone twice with bad results both times. The little bit makes all the difference.
Michael 1920
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