Stopping Ibrutinib: Had to stop for... - CLL America Support

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Stopping Ibrutinib

Corbins profile image
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Had to stop for side effects after 9 months, serious joint/bone pain. !0 days later broke out in a serious case of hives. Dr put me on prednisone which cleared it up for about 7 days, then it came back. Took a left over Ibrutinib and the hives disappeared over night.. literally. After 4 days they came back again, and again another Ibrutinib pill made them disappear.

Has anyone else experienced this? Seems like a crazy immune response to the lack of the drug. Will see Onc this Wednesday to see why this is happening.

Peace, Steve

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Corbins
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ladyprescott profile image
ladyprescott

Hi Corbins…

Yes; I had a bad response to Imbruvica. On April 5 of this year I started 420 mg and on April 19 broke out in a rash like I'd never seen before. I had to stop. Was on prednisone 60 mg for three days, then down to 20 mg for about two weeks. The rash went away, but I could still see it under my skin. My doctor then had me take 280 mg and 10 mg of prednisone to start up again. I tolerated that fine and also got off the prednisone. As of three weeks ago went back to full dose 420 mg without prednisone and I'm doing fine. I'm anemic and still have good days and bad, but the Imbruvica is working. My white count has gone down very well. The hemaglobin has been slower. I want to get out of the anemic range so I can begin to feel better. My advice to you is to talk to your doctor about the stopping and starting. If you can't tolerate the 420 mg stay off it and take the prednisone until the rash is completely gone. Ask your doctor if you can go slowly back on it at either 140 or 280 mg to see if you can tolerate that. I believe you need to allow you body to completely get rid of the rash before trying Imbruvica again. Be sure to speak with your doctor about this. My best to you. Carole

Corbins profile image
Corbins in reply to ladyprescott

Thanks... but the hives appeared when I stopped the Imbruvica.... and crazy is that when I took another 280 mg dose they disappeared within 4/5 hours. Seeing Onc on Wednesday , we'll try to figure something out.

ladyprescott profile image
ladyprescott in reply to Corbins

Glad you're seeing your doctor.