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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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Yes, on Actemra now for 1+ year. It helped me "wean off" prednisone faster and now I am in my 16th month on Actemra infusion. It takes about an hour for the infusion. No side affects. Doesn't hurt. My Rheumatologist wanted me off prednisone (steriod)...was on it for a year. Actemra is helping.
@steph1939 Actemra helped me taper completely off of Prednisone. I tapered 1 mg/month from Jan 2025 to Nov 2025. I am so happy that all of my prednisone side effects went away. I had a lot of them. In addition to the Prednisone, I was able to eliminate 2 other prescriptions that I was taking, due to the side effects.
Actemra helped me get my life back. I didn't feel any improvements until after the 3rd infusion.
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1 ReactionI have been on Actemra for over 1 yr & it has helped. No side effects.
Question for those with just PMR using Actmera. How were you able to get your Part D to pay for it since it’s not FDA approved for PMR?
Hi @graydude,
My rheumatologist submitted information to the insurance company on my attempt to use Kevzara. My gastroenterologist identified hepatic liver cysts after 2 doses of Kevzara and recommended that I discontinue using it. I had no symptoms and no knowledge about the origin of the cysts but my rheumatologist request was approved. I have been on Actemra for just over 1 year without any side effects. Good luck! ❤️
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1 Reaction@graydude I also had GCA. When I got to 10 mg.of prednisone in my taper, I had a flare. I asked my rheumatologist to prescribe it and she did.
@graydude In my county there is no part D plan that will cover Actemra for any reason. I was kicked off the drug company's patient assistance program for Kevzara. I have PMR but I also have some symptoms of GCA ( headache at one temple, pain around my eye and down the side of my face with flare-ups). My doctor thought that was enough reason to give me a diagnosis of "giant cell arteritis syndrome". That allows Actemra infusions to be covered by Medicare and my supplement with part D not getting involved.
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I have been on Actemra for PMR ... not for GCA. My rheumatologist needed to submit an "authorization request" to get it approved for me. The request involved an administrative process but eventually Actemra was approved for me. That was back in 2018 and my first dose of Actemra was on January 1st, 2019.
Once Actemra was approved for me ... I was told it would never be unapproved. Actemra has worked extremely well for me with minimal side effects. I started with the self administered injections. I have done the monthly infusions for the last 4 years. Medicare with the right supplement will pay for 100% of the cost of an infusion so it isn't submitted to Part D of Medicare.
Even though Actemra is not FDA approved for PMR ... some doctors are willing to submit statements that say things like "presumptive GCA" or "subclinical GCA." Remember that Medicare will only pay for the monthly infusions and not the self administered injections.
My rheumatolgist made sure I was willing to try Actemra before submitting the paperwork for the authorization request. He wanted my commitment first because the authorization request was a lot of work for him. I read some of the wording and he convinced a panel of doctors that Actemra represented my "best hope" of ever getting off Prednisone. When the approval came through the panel of doctors stipulated that I be treated "as if I had GCA" and with the protocols established for GCA.
I have never tried Kevzara but it should work the same as Actemra. Kevzara is FDA approved for PMR. The problem with Kevzara is that it doesn't have an IV infusion formulation.
Thank you for the detailed and helpful reply!
@graydude If someone has Medicare with a Supplement and a Plan D then the difference between going to an infusion center to receive you drug and getting an injectable to use it home means that an infusion center is covered by Medicare and your Supplement because the infusion is considered an in-office procedure and not a "drug". If you get the injectable shipped to you and/or pick it up at your specialty drug store then it is a "drug" and comes under your Plan D. A subtle yet significant distinction. The rules are different for sure based on home centered or infusion center treatment.
I was recently Dx with vasculitis and so there is no problem qualifying. Actemra now has a biosimiliar drug, Tyenne, that will be the drug of choice for those people needing Actemra going forward. I would also suggest that in a few years Actemra will be totally removed from all Plan D formulary lists and Tyenne will be the survivor.