Has anyone tapered off Actemra?

There isn't much information about how Actemra should be discontinued. The need to taper off Actemra has been "looked at" because abrupt discontinuation often causes a relapse within a year or two. I have abruptly stopped Actemra when there was a supply chain problem during Covid. There was no Actemra available for 6 months. My symptoms returned but symptom control was regained when Actemra was restarted.
https://www.sciencedirect.com/science/article/pii/S0049017224001483
-------------------------------------
People in the UK are restricted to 1 year of Actemra and that isn't working out too well according to reports.
https://pmc.ncbi.nlm.nih.gov/articles/PMC11079613/
--------------------------------------
In some cases remission is sustained after Actemra is stopped when patients are switched to methotrexate. This was a trial with rheumatoid arthritis patients.
https://pubmed.ncbi.nlm.nih.gov/29853455/
-----------------------------------
I'm not a good case study for how to discontinue Actemra. I have been on Actemra for more than 6 years. Actemra works great for me but my symptoms "gradually return" as I have tapered Actemra. I would not call it a sudden flare or a sudden relapse because my symptoms return gradually. My experience was similar to when my symptoms gradually disappeared in 3 months when I started Actemra only in reverse.

Stretching the injection time interval to longer than 4 weeks caused my symptoms to return.

Stretching my Actemra infusion time to more that 7 weeks also caused my symptoms to return.

Overall my infusion lasts longer which is probably why infusions are done every 4 weeks.

I did not take Actemra but reading the data and Dadcue's literature, I would think stopping Actemra would be easier than those of us that were able to stop taking steroids alone. Are you still taking prednisone? If you have weaned off prednisone then stopping Actemra should depend on whether your PMR is still active. That will be a very individual occurrence. Like Dadcue your PMR may be a lifelong disease. I was fortunate. I was able to stop taking steroids in 6 months. I had two flares the first year but none in the last 3.

Actemra is only approved in the US for GCA, but I know people with PMR get it prescribed occasionally. Relapsing with GCA is riskier than relapsing PMR, since GCA can cause vision loss, aneurysms, aorta dissection, etc. It's difficult to know if your GCA is still active or not, but I would rather not find out by having GCA return.

Google says "Some studies show relapse rates of 40–50% within 18 months of stopping treatment" regarding GCA.

I've been taking weekly injections for a year. I'm expecting to be taking them for at least a couple more years.

I have been on Infusion for 1 yr. It has helped. Dont know when it will be stopped. Trina

I was on Acterma for 2 years. I had infusions of the drug once a month. I was diagnosed with Giant Cell Arthritis. I have been off the infusions for 3 months. The sedimentation rate is what needs to be checked to see if inflamation returns. The normal range is 1 to 20. I was at 61 when I was diagnosed. When I was getting infusions my sed rate was 0. I have been off the drug for 3 months and I am now at Sed Rate of 11. Checking your Sed Rate determines if inflammation returns. I have been told if rate goes above 20 I will need to do infusions again.

This gives me some hope for eventually being able to stop my Actemra infusions. I have been able to go longer than a month between infusions but my inflammation markers trend upward. I wouldn't say my pain increases that much but it does increase some.

My rheumatologists interprets my lab values and says I definitely need to continue Actemra. After about 3 attempts to increase the time between my infusions, now I just stay on a monthly schedule. Currently, there is no plan to discontinue my Actemra infusions. I'm okay with staying on Actemra because I don't seem to have any side effects from Actemra.

The only relapse I had was when Actemra was stopped for 6 months. It wasn't my rheumatologist's intention to stop Actemra. There was a shortage during the Covid epidemic and no Actemra was available. The relapse I had was bad and led to increasing amounts of Prednisone along with a different biologic (Humira) which didn't seem to work very well. The experience I had with that relapse alone was enough to make me want to stay on Actemra.

I can actually say I would not know I have Giant Cell Artiritis. I had no pain once I started the Infusions. Before I had horrible headaches that would not go away. My doctor prescribed Predisone since my Sed rate was 61 range is 1 to 20. My doctor ordered biopsy of arteries above my ears to confirm I had GCA. I just hope I don't get headaches again.

Keep in mind GCA is inflammation of blood vessels in your brain. I was on Actemra infusions for four years. Initially sed rate was 94. Blood vessels tend to shrink when inflamed. Once Actemra was discontinued sed rate remained 1 or there about. Since GCA is rare autoimmune illness, I’m not sure long term diagnosis is known. My point being I had 3 strokes since Nov 2024 - 2 one week apart). MRI showed significant blockage of arteries in my brain. It basically shocked my Rheumo. I am now on Methotrexate (4 pills once weekly) to prevent return of GCA.