Feeling dreadful

[Nickos66]

Hi everyone, I've been taking Ibrutinib on the lowest dosage for approx 18 months now,my bloods have been okish,on the margins but not worrisome.Every now and then I have been feeling dreadful,quite ill and achy,almost like it's a build up of something then goes after a day or so,it's been happening every 4-6 weeks,then kind of back to being ok! Anyone experiencing this? I've was diagnosed 2005,and started treatment, chemo 3 times with remissions and now on ibrutinib.

[TimHB]

I just finished 3 years on Ibrutinib and am in a "wash-out" period before I start Acalabrutinib. I had a similar experience to what you describe. I had terrible mornings - lots of bone and joint pain, mostly in the feet and hands, and a general "hangover" feeling. I took my pills in the morning and it would make me feel even worse for a couple hours and then it would pass and I'd get on with my day. Every 5-8 days or so I'd have a 'bad day' - a day when I felt like a flu was washing over me and sometimes I couldn't leave the house or get out of bed. Since stopping Ibrutinib about 6 weeks ago I feel good! No morning pain, no hangover, no more 'bad days'. So I definitely attribute it to side effects of the Ibrutinib. I hope I have a better experience with Acalabrutinib which is supposed to be just as effective with fewer side effects. You may want to ask your doctor about switching over.

[Nickos66 in reply to TimHB]

Hi Tim,that's exactly how it's been! Thanks for the reply! 👍

[Ginajetta]

Similar experience.. almost 3 years on imbruvica. Just went through two months terrible hip pain barely could walk then eased up. Similar also to TimHB. Still on imbruvica.