Amount of time on Actemra

My first dose of Actemra was January 1st, 2019. I still do monthly infusions. My rheumatologist has no plan to ever stop my Actemra infusions. During my 6+ years on Actemra, I have not had any "serious side effects." A couple of "mild side effects" happened but those resolved quickly when my dose was adjusted.

I was on Prednisone for 12+ years. I had some serious complications from "long term" Prednisone use, Some complications from long term prednisone use didn't immediately resolve after prednisone was stopped. My endocrinologist said it will take a long time for the prednisone side effects to improve and some might be permanent.

After 6+ years of long term Actemra use, my quality of life has greatly improved compared to the 12+ years I was on Prednisone.

I don't wish to suggest that side effects from Actemra never happen. However, my overall experience with Actemra is much better compared to my experience with Prednisone. This is just my personal experience.

I've been taking weekly Actemra injections for 14 months. I haven't had any side effects. I just had blood tests recently before a rheumatologist appointment, and the rheumatologist said my liver values looked great.

I've been getting Actemra infusions for 10 months, now. My rheumatologist and I have never discussed the duration that I would take them. It was my decision to start the infusions. It was a matter of 'pick your poison'. I could count the side effects that I had from the 7 months that I was on prednisone for PMR/GCA, on two hands. Within a couple of months of starting the infusions, I started feeling so much better. The fatigue dissapated and I was able to resume activities, such as golf and water aerobics.

There is a study in England that shows, patients who were on Actemra for only a year, had a higher incidence of relapse. https://academic.oup.com/rheumap/article/8/2/rkae054/7649323

I love that survey from the UK. The patients who responded to the survey are members of a PMR/GCA forum in the UK that I used to belong to. Only people with GCA are allowed to be treated with Actemra in the UK. The mantra was that prednisone was the "only option" for PMR. For GCA, Actemra is limited to one year with no possibility to restart Actemra if a relapse occurs after stopping Actemra.

When I told members on the UK forum about my experience with Actemra, the general folks on the forum seemed interested. The monitors for the UK forum said my experience with Actemra to treat PMR wasn't pertinent to people in the UK. One of the monitors told me that it would be okay for me to take Prednisone for the rest of my life because Actemra was too risky. I was discouraged from even trying Actemra.

I'm glad some people in the UK have received treatment with Actemra. I pity those who received Actemra and had good results but they relapsed when they had to discontinue Actemra after one year.

I also had to discontinue Actemra in 2020 approximately one year after starting Actemra. There were supply chain problems that caused a shortage of Actemra in the USA. Seriously ill Covid patients received Actemra to control the inflammation caused by their Covid infection. In any case I relapsed when Actemra was stopped because of a supply shortage.

I had to go back on 15-20 mg of Prednisone again for about 4 months until supplies of Actemra improved. My pain returned and I deteriorated while I was on Prednisone. Fortunately, after restarting Actemra, my pain improved and I felt better again.

Even though I was on prednisone again for 4 months ... it only took me about 4 weeks to taper off Prednisone after Actemra was restarted.

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 .

@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."

@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.

I believe prednisone is known to increase BS and that Actemra to lower it …as long as you keep your eye on BS levels you should continue to do well …I think I must have a lower blood sugar level normally …hoping to get back on Actemra when I figure out if something else causing such low levels !