Have been off prednisone for over a month now and doing well. Tested positive Saturday for COVID (thought it was a cold). I am still taking my weekly Actemra injections, the last was Friday. The Actemra information sheet suggests discontinuing shots if ill. My last few blood tests have had extremely high cholesterol, low neutrophils, high A.G ratio, high BUN/Creatine ratio, and I have high blood pressure, all of which may be affected by Actemra. I have a call in to my PC and Rhumy, but no response yet.
Does anyone have experience with discontinuing their Actemra for short term, or permanently?
Thanks,
Carol
Written by
Abikitty
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dear Abikitty, when I had. COVID I postponed just one of my Actemra injections without any problem. At that time I injected every 10 days and with the postponement it was 16 days or so during the infection. Thereafter I continued again with the 10 days rhythm.
I paused Actemra whenever I had a significant acute illness. I eventually stopped it ahead of time due to abdominal pain ( diverticula disease was confirmed). I did not experience any withdrawal or effect on my AI disease.
To be honest - all those results would suggest to me that your use of Actemra needs some reassessment anyway, Low neutrophils put you at risk of developing infections and usually the advice is to either increase the interval between injections to 2 weeks or stop for a while to allow the neutrophils to recover.
You must get some medical advices as soon as possible - especially since having just stopped pred your adrenal function is unlikely to be back to normal and that also puts you at risk of an adrenal crisis in the case of illness. If you start to experience any of the symptoms described here:
Thank you, as always for your response. I will monitor symptoms in accordance to your referenced article and await response from my Rhumy about any treatment or lab work plan. I hope all goes well from here.
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