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I have been on Actemra for 18 months for PMR and rheumatoid Arthritis..the first 6 months were every two week injections then upped to weekly when it wasn’t holding the pain .it seemed to help me come off prednisone but it has been a very slow process. I’m on 2 mg atm ,reducing 1 mg a month so almost there ! The pain never left however moving from hips to knees . I started getting palpitations and feeling lightheaded to say nothing about feeling very tired …everything ached . Folllowing an episode of feeling really out of it and seeing my low 4.2 A1C levels for the past year I was put on a glucose monitor .It revealed I was hypoglycaemic so I stopped Actemra . That was two weeks ago and I am feeling unbelievably better . I’m not having low glucose alarms going off all night and my levels seem to be very level if still on the low side . Don’t know what that means for the future of my taking it but I wanted to alert others to the possibility of this side effect .
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@nancy334 I've been on Prednisone since July 2024. I'm currently at 2 mg. Also, taking monthly Actemra infusions. No sooner did I start on 60 mg. of Prednisone, my blood sugar spiked. One time, my PCP had me go to the emergency room, because my BS was 275. I was put on metformin and daily glucose monitoring. Happy to say, my current blood sugar is normal, as well as my A1C. My A1C had been high until September 2025. Yesterday during my PCP appointment, she discontinued my metformin (yay!)
I don't know if my decrease in BS is due to my lower dosage of Prednisone or Actemra. I'm just happy that it's normal now.
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@nancy334
Thank-you for this information. I wonder how much of the blame lies with Actemra? I don't really know.
What I do know is that chronic inflammation and Prednisone affect our metabolism. The body does its best to maintain an equilibrium (homeostasis) even when the equilibrium is a response to negative things.
When I started Actemra and tapered off prednisone, it took a long time for my body to reestablish a new metabolic equilibrium. Many medications I was taking while on Prednisone had to be adjusted and/or discontinued.
Sometimes our response to taking Prednisone is a drastic reduction in carbohydrate intake. I stopped eating almost everything that would cause me to gain more weight. In spite of my best efforts to reduce carbohydrates and calories I still gained weight and I was borderline diabetic.
Five years after stopping Prednisone I still have metabolic abnormalities. I'm trying to make lifestyle changes such as eating breakfast and not going all day without eating.
I did an artificial intelligence search about how Actemra could affect blood sugars and got the following result. Some of the reasons for lower blood sugars are the result of lower levels of inflammation.
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From artificial intelligence:
"How Actemra can affect blood sugar:
Impact on IL-6:
IL-6 can interfere with insulin signaling, which can increase blood glucose levels. By blocking IL-6, Actemra may improve how the body uses insulin, leading to lower blood sugar.
Reduced inflammation:
In inflammatory conditions like rheumatoid arthritis, inflammation can drive up blood sugar levels. When Actemra reduces this inflammation, blood glucose levels can decrease.
Possible effect on A1C:
The A1C test measures your average blood sugar over the past 3 months. In a 2022 study, patients taking tocilizumab had a significant reduction in their A1C, regardless of whether they had diabetes. Your low 4.2 A1C could be an indicator of this effect.
Misleading lab results:
For people taking Actemra, a low A1C level may not accurately reflect their average glucose levels, because the drug directly interferes with the inflammatory process that affects blood sugar. This makes continuous glucose monitoring (CGM), like the one you used, a valuable tool for accurately assessing blood sugar."
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My blood sugar levels decreased on Actemra but I was never hypoglycemic. When Actemra allowed me to taper off Prednisone, my endocrinologist said I had insulin resistance and metabolic syndrome. Those conditions weren't because of Actemra.
When I did a Google search on the above sentences and I got the following result.
"Based on your experience, the decrease in blood sugar while on Actemra and tapering off prednisone is a result of the complex relationship between inflammation, corticosteroids, and the effects of Actemra itself. Your endocrinologist's diagnosis of insulin resistance and metabolic syndrome points to a deeper metabolic issue that was likely masked by the previous medications."