Questions for people taking Actemra and Kevzara injections

I’ve been on actemra for over a year now. I inject it weekly and have had no issues. My specialty pharmacy sends me 4 injections packed in a cooler with ice packs by ups every four weeks delivered to my door. I don’t have Medicare.

I have been taking Actemra injections since 7/24 once per week. I have Medicare and BCBS Federal. The process is via CVS Speciality Pharmacy with 4 shots shipped with cold packs to my door Usually 2-3 weeks in advance. I trigger the shipment after the pharmacy notifies me the renewal is available.

I find it easier to take the infusion every four weeks. It is completely covered by Medicare.

Wow!
That seems absurd!
I went to a rheumatologist's office (two blocks away) and they had a nurse there that did the IV injections. I used to get 1x month and then started spacing them out more when I tapered off Actemra.

Isn't there a hospital w a rheumatology dept closer to you where you can get the infusions?

Your pharmacy and insurance is more flexible than mine. I can usually order a refill about 10 days before I will need one of the injections, and if I order the refill online, I can only choose to have it delivered within 2 days of when I will need the first injection. If I call and talk to an agent at the pharmacy, I can get it delivered about 8 days before I will need the first one.

When I started Actemra a year ago, I never knew who or why the decision was made to use injections vs infusion. My rheumatologist office is about 2 and half miles away, and is beside a hospital. I think I could get an infusion at the rheumatologist's office. Also, this morning I noticed a business along one of my walking routes, IVX Health, that only does infusions. I looked it up online, and they're in 15 states.

It seems like one advantage of injections is that you can travel with the injections, so your schedule can be more flexible. Plus you can take the injection whatever time of day is convenient. It seems like the main advantage of the infusions is that they're covered by Part B. Plus you don't take them as often as injections.

The only reason I did not get injections is because they are not covered by insurance.
Medicare covered infusions.
Crazy - cause I would think self-injections are less expensive!!!

Did you actually taper off Actemra infusions? I haven't been able to discontinue Actemra injections or infusions in 6 years.

I started with Actemra injections every 2 weeks and was able to taper off Prednisone. Almost as soon as I tapered off Prednisone, I had a flare of another autoimmune condition but not PMR.

After a period of "adjustments" Actemra injections were restarted but done weekly instead of every 2 weeks. Weekly injections worked better until there was a supply disruption during Covid. I had a huge setback during the 6 months I was off Actemra until supplies improved.

I won't go into details but a neurosurgeon thought surgery was needed but I had to be off Actemra for a month before surgery and a month after surgery. The decision to switch me to Actemra infusions was to see if I could go 2 months between infusions. Two months between Actemra infusions was challenging. PMR symptoms returned at about 7 weeks. I wouldn't say PMR relapsed but my symptoms returned and my inflammation markers were elevated.

A good thing happened when I did Actemra infusions. The reason for having spine surgery was "reabsorbed" when I did Actemra infusions. The following happened:

"Synovial cysts in the lumbar spine can, in some cases, resolve on their own (reabsorb) through a process of natural regression. This process is thought to occur due to a reduction in inflammatory fluid production which causes the cyst to shrink and its contents to be reabsorbed."

The neurosurgeon had no explanation why this occured. My rheumatologist was willing to say Actemra infusions worked better for me than the injections. My rheumatologist kept me on monthly Actemra infusions. I have been doing monthly infusions for 3 years.

The spine surgery that was needed is still pending. The synovial cyst hasn't recurred.

Yes! After I stopped
Prednisone (slowest taper ever!) I was off Actemra in about six months... with no problems.

Glad to hear about the synovial cyst situation!!!

My rheumatologist said that my insurance plan is the Gold standard. I hope it doesn’t change with the current administration in DC. I am a retired federal employee and my Insurance is tied to my retirement. I am currently at 2.5mg prednisone and Actemra shot once a week. I hope to be off Prednisone by the time I’m due for Covid shot this fall.