I’m experiencing low blood counts off prednisone taking Actemra

I've been on Actemra about 6 months. All my labs were normal before I started and I now have low white cells but red cells are fine. Four other tests are out of whack now including cholesterol. I had the same experience with the white cells and cholesterol when I was on Kevzara, which is a similar drug.. Those are known side effects. The low white cells indicate that the immune system is being suppressed. My doctor doesn't seem too worried about the slightly low white cells and I have not had any infections, colds or flu since I've been on all these immune suppressing drugs for over 4 years. Red cells could be another issue. I would talk to your doctor.

@linda7 i’ve been under the care of a hematologist. He also believes that it is from the Actemra. My white count was as slow as 1.9, and the red was as low as 3.1.
Thank you for responding

I’ve been on Actemra for over a year due to GCA, same problem with white blood cell count & higher cholesterol; Dr. doesn’t seem concerned. My last labs were finally all normal.

I've been on monthly Actemra infusions for 11 months. I had my quarterly bloodwork done this week. From when I began the infusions in Jan., my WBC has gone from 8 to 2.5. My absolute neutrophils went from 5975 to 1035. Before GCA/PMR, I wouldn't even catch a cold. Last Dec 2024, I had a flare. As a bonus, I got a cold during the holidays that lasted about 3 weeks. In July 2025, I got Covid for the first time. I went to Iceland in October 2025. I was on a small (16 people) tour on a minibus. I wore an N95 mask the entire flight over and while we were traveling around Iceland (except when eating). The day before I flew back, I started coughing. I ended up with a respiratory infections. I am just now getting over all the symptoms. I mask up when I go into stores, too.

I know that Prednisone and Actemra were going to compromise my immune system. It was a 'pick your poison' decision for me. I needed the Actemra to taper off of the Prednisone, without having a flare. It worked. I took my last dose of Prednisone this past week.

My rheumatologist will get the bloodwork results on Monday. During my last visit, he told me that I would be on my current dose of Actemra until Jan 2027. At that point, he will taper my doseage down. I'm elated that I'm off of Prednisone and I feel like I'm back to 75% of my pre-GCA/PMR condition. I was very physically active before I got GCA/PMR. I fear that I will be getting respiratory infections on a regular basis.

@linda7 I started on KEVZARA and 2weeks later my Rheumatologist called and stopped the shots saying my WBC went from 11.3 to 1.9
Back on methotrexate and prednisone.

@ropnrose

My white blood cell count (WBC) and absolute neutrophil count (ANC) also dropped on Actemra but I didn't have such a drastic drop as you. When my counts dropped there was some debate about what to do. Fortunately, my counts improved and my lower counts were temporary so nothing was done. The debate was whether to decrease my Actemra infusion dose or to increase the time between my infusions.

Discontinuing Actemra might be needed but since you have tapered off Prednisone ... maybe your counts will improve.

"Both Actemra (tocilizumab) and prednisone can affect neutrophil counts. When used in combination, as is often the case, patients require careful monitoring for neutropenia, though no direct drug interaction has been found."

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I have been on Actemra without Prednisone for several years. My WBC and ANC are in the normal range and have improved after I discontinued Prednisone. I was told my ANC was the more critical value. If it makes you feel better, your current ANC of 1,035 falls into the mild neutropenia category (ANC: 1,000 to 1,500 cells/mcL).

Ler's hope your numbers improve.

For anyone so inclined ... the following link attempts to explain why neutropenia happens during IL-6 inhibition.
https://ascpt.onlinelibrary.wiley.com/doi/10.1002/psp4.12534.
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Artificial intelligence says the following:
"The mechanism for why neutropenia occurs with Actemra (tocilizumab) is primarily due to the redistribution (margination) of neutrophils from the circulating blood into non-circulating pools, such as the bone marrow and spleen, rather than the destruction of neutrophils or a decrease in their overall production.

Mechanism of Neutropenia:
By blocking the (IL-6) signal that causes neutrophils to leave the bone marrow and other marginal pools and enter the bloodstream, tocilizumab causes these cells to remain in the storage sites. This leads to a measurable decrease in the absolute neutrophil count (ANC) in the peripheral blood."