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Actemra is helping me to taper off of prednisone at a faster rate. I started Actemra when I was taking 50 mg per day of prednisone, and I'll be going to 10 mg / day in just a few days. I take weekly injections of Actemra. I don't know yet what my rheumatologist has planned for the final 10 mg. I'll find out in 3 weeks at my next appointment. So far the taper has gone well. I haven't had any symptoms of a flare.
That's interesting about your synovial cyst healing back up.
I just did a quick google about what Actemra does, and the AI response had this information:
"Actemra (tocilizumab) is a medication that specifically blocks interleukin-6 (IL-6) by acting as an IL-6 receptor antagonist, preventing IL-6 from activating the immune system and causing inflammation; essentially, it blocks IL-6 from connecting to cells in the body.
Key points about Actemra and IL-6:
Mechanism of action:
Actemra binds to the IL-6 receptor, preventing IL-6 from signaling to cells and triggering inflammatory responses.
Treatment applications:
Due to its ability to block IL-6, Actemra is used to treat conditions where excessive inflammation is driven by high levels of IL-6, such as rheumatoid arthritis, giant cell arteritis, and systemic juvenile idiopathic arthritis. "
In the PMRGCAuk support group, they frequently say that there are 3 primary types of inflamation that can affect PMR and GCA, and depending on each person's mix of these 3 types determines if they can get off prednisone by taking Actemra.
Replies to "Actemra is helping me to taper off of prednisone at a faster rate. I started Actemra..."
I was just started on methotrexate because I’m unable to get below 40 mg prednisone. My CRP is still really high, and although I don’t have classic symptoms of GCA my rheum is wondering about large vessel vasculitis and wants me to have an MRI. I’m so tired of this and it’s only been 4 months.
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"Actemra is helping me to taper off of prednisone at a faster rate. I started Actemra when I was taking 50 mg per day of prednisone, and I'll be going to 10 mg / day in just a few days."
This is a good sign. I hope you can continue to taper off faster. I started out at approximately 50 mg of prednisone and coundn't get anywhere near 10 mg for the next 10 years. After 12 years, I barely managed to stay on 10 mg which was when my rheumatologist wanted to give Actemra a try. Actemra allowed me to quickly taper to 3 mg but I needed to stay on 3 mg for more than 6 months. I didn't have a flare but my cortisol level was too low for me to taper any lower. Fortunately, my cortisol level improved and I was able to go to zero in just a few days.
An endocrinologist said that 3 mg was such a low prednisone dose that there was no need to taper "as long as my cortisol level was adequate." I could just stop taking prednisone if I wanted to but if I "felt the need" I should restart Prednisone again.
I was afraid to simply stop taking prednisone because I took it daily for the better part of 13 years. I did a fast taper from 3 mg to zero in just a few days.
Depending on how long you have taken prednisone, be aware of symptoms of adrenal insufficiency. I persevered when the PMRGCAuk support group experts were saying prednisone at 5 mg or less was safe to take for the rest of my life. My rhematologist said 3 mg or less might be okay but my endocrinologist said I should try to get off prednisone if I could.
I hope Actemra continues to work for you. My rheumatologist now thinks I'm much better being off prednisone than I ever was when I took prednisone. Apparently, my IL-6 level was my only problem. In any case, I have now been off prednisone for 3 years as long as I stay on Actemra. My rheumatolgist doesn't have any plan to stop Actemra anytime soon.