Foot Pain: After being on Ibrutinib for a year I... - CLL Support

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Foot Pain

pilantd profile image
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After being on Ibrutinib for a year I started feeling pain and swelling in my feet. I suspect some of what I'm experiencing could be high blood pressure and some dehydration. However, I'm curious to know if others have had this experience after taking IB for a year or more?

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pilantd
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TimHB profile image
TimHB

I've been on ibrutinib for 7 months. For the first few months I had roving joint pain in elbows, wrists, hands, knees and feet, later in shoulders, hips and spine. My doc said this was to be expected and meant it was working so I welcomed it and took a lot of Tylenol. That has now passed and I only get pain in my feet - it flares at night and is especially acute in the mornings - can barely walk. But it passes as I get on with my day. Sometimes my feet swell and I have to loosen or remove my shoes, but that, too, passes. I keep Tylenol close at hand. By the way, the infusion center I go to at UCSD has an oncology masseuse who gives foot massages for this very reason. Very welcome relief!

pilantd profile image
pilantd in reply to TimHB

Thanks for sharing your experience TimHB. I started taking Ibrutinib April 2017 and didn't feel any side-effects until my finger nails started chipping and flaking 6 to 7 months later. My feet have been feeling swollen and tender for the past 6 to 8 months. Sometimes during the day I also have to remove my shoes and give my feet a break. I also keep Tylenol close by and will consider taking it when my feet are uncomfortable. Our oncology center also has a masseuse and perhaps I should request a foot massage. There are days I could use some of that relief.

6468 profile image
6468 in reply to pilantd

After 2 weeks on imbruvica I had swollen hands and feet but it didn't last. The past 4 weeks I have had bone pain in many areas. This also comes and goes. I already have arthritis, so this is for me just one step worse. It seems like their are so many side effects and everyone is different, as to reactions. Wonderful for those who are not dealing with them. In regards to side effects, has anyone had tongue issues? Tongue is sore, most of the time. Everyone, hope you have a good day.

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