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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?

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Replies to "Wow! That seems absurd! I went to a rheumatologist's office (two blocks away) and they had..."

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.

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.