Infusion vs injection of tocilizumab (Actmera)

I have Medicare and Fed Govt Blue Cross. They insisted I be on Prednisone for three months before I start Acterma before they approve payment. Going from 12.5 Pred to 10 mg tomorrow.
The injections would be preferable to me since I have friends who are nurses that would give them to me but my guess is the insurance will only pay for infusion.
They wanted $3000 to start the infusion in July instead of August if I did not want to wait for three months of Prednisone. I decided to wait since I am doing Ok on the Prednisone.

Thank you all for your contributions. I am newly diagnosed with Giant Cell Arteritis. Making tocilizumab a part of my therapy is in the plan but before reading this discussion I didn’t understand the insurance ramifications about choosing self-injections vs infusion. Appreciate your comments.

Actemra (tocilizumab) is FDA approved for Giant Cell Arteritis (GCA). You have the right diagnosis but treatment with Actemra is expensive. If you have Medicare + Supplement, your best option is a monthly infusion.

Reimbursement for the Actemra injections gets complicated. It depends on what type of insurance you have.

Self administered injections compared to monthly infusions are equally efficacious in my opinion. I currently do a monthly infusion but I have also done the self administered injections in the past.

I think my cost are exactly the same for Actemra infusions vs injections. I pay $49 per month for either with Medicare and a supplement. After 3 years on prednisone with tapering just not working for me, I finally surrendered and tried Actemra. I have been taking it for 10 months with interruptions (due to shingles) and I am finally down to 9 mg of prednisone. It’s the slow taper now but I am very thankful! ❤️ I am not pain free but I’m better and thankfully no side effects! Hope that info helps someone.

Was diagnosed with PMR 2 years ago and put on Prednisone (20 mgs ... in error, dosage should have been 10). Had an immediate positive reaction but a significant weight gain. So the dosage was reduced and I eventually got an appointment with a rheumatologist who prescribed Tocilizumab by infusion. I found it fantastic, lost the steroid weight and felt very good. However, after 6 months I had a reaction. I have psiorasis which had been dormant and flared up. So, I've been given Infliximab (Remicade) as an infusion. It doesn't work as well, my energy levels are very low and am experiencing joint pain again. My rheumatologist has said that PMR doesn't go away so whatever I take will be long-term. Feeling concerned now about options. Posting here as I'm due a visit to the rheumatologist in the coming week and interested to see how others are managing.

I have a Medicare Advantage plan that covers Actemra injections with pre-approval. The injections are covered under Medicare Part D, so there is a $2000 maximum this year for all Part D prescriptions combined.

"I eventually got an appointment with a rheumatologist who prescribed Tocilizumab by infusion. I found it fantastic, lost the steroid weight and felt very good. However, after 6 months I had a reaction."
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Was the flare of psoriasis the reaction that you had? I'm thinking you have psoriatic arthritis in addition to PMR.

Actemra enabled me to get completely off Prednisone for the first time in forever. I have been "prednisone free" for about 5 years. I now do a monthly infusion but I started with Actemra injections on January 1st, 2019.

The first time, I tapered off Prednisone I was on Actemra alone when I had a flare of uveitis. It was completely unexpected because uveitis had been dormant for many years while I took Prednisone daily to treat PMR. My ophthalmologist restarted 60 mg of prednisone and stopped Actemra. It was a sad day.

Humira was substituted for Actemra to treat uveitis but Humira didn't work too well for PMR. I was unable to taper off prednisone again and got stuck on 15 mg of Prednisone. Some difficult decisions were made but I decided it was more important for me to be off prednisone. It was my choice to go back on Actemra with the "understanding" that uveitis would probably recur.

When Actemra was restarted, I was able to taper off Prednisone for the second time. I went from 15 mg to zero in slightly more than a month. Eventually, a monthly infusion of Actemra was started to precisely control my dose. I haven't had flares of anything as long as I do my monthly infusions of Actemra. My side effects from being on Actemra for more than 6 years have been minimal.

According to my rheumatologist, the problem is that it would be impossible to "optimally treat" all my autoimmune conditions with a single biologic. I chose Actemra because it works the best for me. My rheumatologist also said that taking prednisone for the rest of my life wouldn't be the best outcome.

Yes, my psoriasis which had been dormant for about 5 years resurfaced. Hence the move to Infliximab which isn't particularly effective for PMR. So, I'm hoping my rheumatologist can prescribe another biologic because there's no way I'm going back on Prednisone

Maybe Rinvoq (upadacitinib) would work. It was recently FDA approved for GCA and has already been used for psoriatic arthritis.

Technically ... Actemra isn't FDA approved for either PMR or psoriatic arthritis.. My rheumatologist only wanted me to try Actemra because he felt it "should work" for PMR since many people with GCA also have PMR.

Actemra was originally FDA approved for RA but was shown to be effective for GCA in 2017. That was why my rheumatologist wanted me to try Actemra. I have both PMR and reactive arthritis (ReA) along with uveitis. ReA is sometimes called a "cousin" to rheumatoid arthritis (RA) due to some shared characteristics. ReA and psoriatic arthritis are in the "same family" of autoimmune disorders.

Anyway, both my rheumatologist and ophthalmologist are currently pleased that Actemra seems to be working for me. However, Rinvoq has already been mentioned as a possibility for me if Actemra stops working. All of my doctors, including me, would rather that I not take Prednisone again for many reasons.

The more I read the more confused I get. So far, my local RA doctor wants to treat my GCA ( diagnosed in May 2025) with Acterma starting in mid August. By that time I will be down to 7.5 mg of Prednisone ( started at 40mg) .
But the tests that the Mayo Clinic doctor just sent me for before my appointment there in 7/29 appear to me that I might possibly have more than just GCA.
I’m thinking of pushing this start date back to see how low I can get on Prednisone alone before adding anything ?
Knowing no one’s body reacts the same makes it all almost a guessing game what to do
Am I crazy ???