On FLAIR trial. Having stopped Ibrutinib for a week due to side effects of extreme muscle pain, I began again with low dose of 1 pill. After 12 days (fingers and toes crossed) I seem to be OK. Feeling much better. Now we move up to 2 a day. Dr thinks I will not go back to full dosage. General opinion that maybe the high dose was effective, worth the pain... WBC went from 196 to 44 and now to 48.
Anyway the main point of this post is that as a result of the Idealisib trial problems with infections they have immediately added antibiotics and anti fungal medication to the Ibrutinib I am taking. To be taken with the IB as a precaution.
Written by
romarin
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They said it was because of concerns over infection with Idealisib and worth taking the precaution. And had I been on FCR arm of FLAIR I would have had antibiotics anyway. So dont know if FLAIR protocol has changed but I thought I should alert folk.
Hi romarin, I go back to clinic early April to have bloods and collect next batch of ibrutinib, I'll see if they give me antibiotics, I'm already on antiviral pills, Terry
I was put on anti virals from day 1 of Ibrutinib but after a month I didn't get the anti virals and virtually immediately got my third case of shingles. I'm back on the anti virals now and hope to stay on them as long as I'm on the Ibrutinib - I couldn't stand a 4th bout of shingles. Does anyone have experience of any side effects from long term use of anti virals?
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High fever as side effect of Ibrutinib ?
severe Leg Muscle pain and weakness Using Ibrutinib daily.... want to try every other day, thoughts ?
