I have been taking Actemra since June 2018. It allowed me to taper more quickly all through the summer; the Actemra side effects were manageable. In October it began. I had 2 ear infections about a month apart. Both times I had to take Amoxicillin. Then I had a toothache. It turned out to be an infection in a crown which had been placed in 2015. I needed a root canal and more Amoxicillin while all that was going on. While taking antibiotics, my doctor advised me to discontinue the Actemra until antibiotics were finished. The root canal was completed successfully. Then, Just this week, I was scheduled to begin the Actemra regiment again and I caught a virus. Although I have not needed an antibiotic yet, I am scared to start Actemra again. I would like to fight this virus off, if I can. I am currently at 12.5 mg and I plan to stay there until I know I am stable. Earlier in the fall of 2018 I had a flare while taking Actemra. Frankly, I begin to wonder, if I should press on with just prednisone. My doctor recommended- even though I would be scheduled to take Actemra- a very slow classic taper when I reach 10 mg of prednisone. Frankly, I don’t know if I’m going to continue with Actemra. Actemra places a second hit on my already suppressed immune system. Its been a real battle.
Your thoughts.
Thanks
Written by
Lauren103
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If it were me I'd want to try and see how I got on with just pred. I'm very much of the opinion that Actemra should be reserved for the patients who have problems and struggle to reduce rather than being thrown in the mix immediately. But that's my opinion - though I suspect it is the basis that NICE used for approval in England.
I think Actemera is better utilised when a patient is having problems reducing the Pred; it is virtually another steroid sparer rather than a first choice drug to be used instead of Pred.
Plus, although it’s been on the market for some time, its use in GCA is still in its infancy - particularly in U.K.,
My consultant put me on Kevzara instead of Actemra because he said its record re infections was much better. I've been taking it since June and have had two colds, which isn't bad, I suppose, and it's certainly helping my steroid reduction - now on 6mg.
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