Infusion vs injection of tocilizumab (Actmera)

There are different benefits to all three ways of getting Actemra.

I have done all three ways at various times. I started with injections every 2 weeks to "play it safe" as my rheumatologist said. I was able to taper off prednisone doing injections every 2 weeks. However, within two weeks of tapering off prednisone for the first time in 12 years... I had a flare but not a PMR flare.

A different biologic was tried called Humira and 60 mg of prednisone was restarted. Humira didn't control my PMR pain. I got stuck on 15 mg prednisone again and couldn't taper any lower.

I switched from Humira back to Actemra but my rheumatologist suggested weekly injections instead of every 2 weeks might work better. Weekly injections of Actemra worked better. I tapered my prednisone dose from 15 mg to zero in about a month and got off Prednisone for a second time.

I did well on weekly injections of Actemra until a supply shortage of Actemra happened. Existing supplies of Actemra were diverted to seriously ill Covid patients. I didn't get resupplied with any Actemra injections for about 6 months.

When Actemra was restarted, I was in a world of pain even with 20 mg of Prednisone. A synovial cyst had formed on my lumbar spine in spite of me being on prednisone. A lumbar spinal fusion was scheduled to fix the problem except I had to be off prednisone. Additionally, I had to be off Actemra for a month before surgery and a month after surgery. There was no way I was going to be able to go 2 months without an Actemra injection.

My rheumatologist suggested that I switch to an infusion of Actemra. The time between infusions is normally 4 weeks but it might be possible to go 2 months between infusions. I did infusions for a year. I was able to go 7 weeks between Actemra infusions. The spine surgeon said 7 weeks would be a long enough time to do surgery. My back pain was much improved by this time. In preparation for my lumbar fusion, another MRI was done. The synovial cyst that had formed was gone so surgery was postponed. I stayed on Actemra infusions which I have done for about 3 years. I currently do an infusion every 4 weeks and that works the best for me.

I did some research about synovial cyst formation. While degenerative changes of the spine are the primary cause --- it turns out that the fluid formation is an inflammatory process. My rheumatologist said that Actemra very likely stopped the inflammation and the synovial cyst was reabsorbed.
https://www.spine-health.com/conditions/spinal-stenosis/synovial-cyst-lumbar-spine

I've been taking weekly Actemra injections for almost a year, so I can speak to that. I get the injections from a specialty pharmacy several hundred miles from my house. I get them in shipments of either 4 or 12, depending on what my rheumatologist prescribed. I think taking the injections allow you to be a little more flexible with your schedule and traveling. I can ask to receive the shipment anytime from 8 days before I will need an injection up to the day I will need one. So if I need to be out of town for a week, I can get the shipment during the other week. Also, if I travel, the injections are good for up to 2 weeks without refrigeration, so I can travel with the injections and not have to refrigerate them. If you travel longer or if you prefer, you can buy a special cold pack for traveling with the injections. Also I like giving myself the injection at home when it is convenient, and I don't have to drive anywhere. I just have to inject the same day every week.

If you live in the US, there are some differences in insurance between injections and infusions. Infusions are covered under part B of Medicare, and injections under part D. I have a Medicare Advantage plan that covers either type, but they require prior authorization. I think straight Medicare doesn't cover the injections, but I'm not sure about that. Also some Medicare Advantage plans won't cover the injections. Just this week I had to get the injections re-authorized for another year. The insurance approved it within 24 hours of the request.

I'm sure people can make a good case for infusions too. I think the copay might be lower for infusions, but I'm not sure about that. This year the out-of-pocket limit for all Part D medications combined is $2000, and one shipment of 4 Actemra injections pretty much meets that number.

Great info, thanks!
Do most people need to stay on this indefinitely, or is the general plan to get the PMR under control and then once you are in remission you need to restart only if you get a flare or new symptom?

I think a lot of people are able to stop Actemra and still have a "sustained remission." I'm not one of those people and have been on Actemra for more than 6 years. Actemra was stopped a couple of times for different reasons --- what happened to me after Actemra was stopped wasn't good.

My rheumatologist has no plan to stop Actemra as long as it continues to work. I'm glad I don't live in the UK. People in the UK are lucky if they can get Actemra and for GCA only. The medical system in the UK restricts Actemra and limits its use to only one year. I hope that restriction changes for UK citizens.

It would depend on your insurance first of all. I have straight Medicare and a Part D plan. No Part D plan sold in my county will cover Actemra injections. The $2000 cap does not help if the drug isn't covered at all. I am on Actemra infusions and I was on Kevzara, a similar drug, injections. Kevzara was not particularly effective. I did not mind too much giving myself the injections but so far the infusions are more pleasant and the Actemra is working. I have not gotten a Medicare statement yet but my research indicates that it will be fully covered, no copays with the supplement I have. The clinical trials for Actemra showed around 50% of patients with GCA were off prednisone and Actemra after a year. I told that to the nurse who gave me the infusion and she said, "We won't talk about the other 50%". In any case, I'll take those odds after almost 4 years on prednisone!

"We won't talk about the other 50%". In any case, I'll take those odds after almost 4 years on prednisone!"
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The other 50% have a relapse and remain on Prednisone because Actemra doesn't seem to work for them. A 50% response to a medication can be considered a positive sign, particularly for conditions that are difficult to treat or have limited treatment options.

The side effects from Actemra alone are hard to determine when people are still taking Prednisone. Serious infections are possible but that risk is there for people on Prednisone too.

My rheumatologist was worried whenever I needed more than one medication to suppress my immune system. I would have complications and she wouldn't blame either medication. She would say my immune system was being suppressed too much.

I don't seem to have any problems with side effects from Actemra alone. One of the goals for trying Actemra was to get me off of Prednisone. My doctor flat out said, "I couldn't take Prednisone for the rest of my life." She didn't mean I had to stop taking Prednisone ... She just felt lifelong prednisone wasn't that good of an outcome.

Wow, so glad you made it through what must have been a hellish time. My pain has been miserable for the past few weeks ( had 2 separate episodes of shingles—despite shingles shots) and had to abstain from my Actemra injections for about 5 weeks. I was able to restart my Actemra injection last week and am praying for all the good stuff and my Prednisone taper can continue. Thanks for hanging in there and posting. Blessings!

My rheumatologist checked with Medicare and they only covered
Infusions, no injections.
I would go 1x each month and the lovely nurse at my rheumatologist's office would give me the infusion. I had no issues at all. But I was on Actemra for at least a few months after I stopped prednisone (can't remember exactly).
Good luck!!

Thank you! I decided to go ahead with the infusion. My Medicare advantage plan only partially pays for either method, but I'm at a point where I'm willing to make financial sacrifices in other ways if I can get to zero Prednisone within a matter of months. (I know that's not guaranteed).
My goodness, this forum is a lifeline!!

I was on prednisone for about 1 1/2 years. Took several attempts to taper to a lower dose then had to go up a little again.
But -
Eventually was off!!