Ibrutinib and feet swelling: Been on Ibrutinib... - CLL Support

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Ibrutinib and feet swelling

Woodhurst profile image
12 Replies

Been on Ibrutinib for 2 years now and feet and legs are swollen. Any one else had these symptoms? Everything else ok

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Woodhurst
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12 Replies
Handley profile image
Handley

Hi Woodhurst - I only took Ibrutinib for 6 weeks, ending June last year - and had to come off it due to repeated neutropenic sepsis and hospital stays. Following that I had problems with swollen legs (knees down) which have stopped now, but I still have itchy shins and feet. I'm convinced it was the Ib as it was all too coincidental! It seems to be wonderful for some (hopefully for you as you've been on it for so long), but just doesn't suit others. Maybe your consultant will recommend walking? Good luck - Handley

Woodhurst profile image
Woodhurst in reply toHandley

Hi Handley

Thanks for your informative response.

Good luck with everything, Woody

john-doe profile image
john-doe

Yes, I had swelling of feet and lower legs while on ibrutinib. Walking became painful in the ankle area. The easiest way for me to notice the swelling was to take my socks off. There would be an easy to see indentation where the top of the sock used to be. I also developed hard red bumps about an inch wide on the lower legs. I seem to get more side effects than most on the lines of treatments that I have tried. The price of being a sensitive male!

Woodhurst profile image
Woodhurst in reply tojohn-doe

Thanks, I know what you mean, Woody

Mcpill profile image
Mcpill

Over the period of 2.5 years on Ibrutinib I developed severe swelling in my ankles, and feet, which required increased doses of hydrochlorothiazide, and eventually allopurinol. It got so bad that there were days when I could not get shoes or boots on my feet. I later discovered thatI had also had problems with inflammation in my eyes, worsening my eyesight (I thought it was just age related). My specialist suggested switching to Venclexta early in 2017 when it became available for use. I prolonged the decision because I saw it as a "last resort". Finally by September I had no choice, and I made the switch. By that time, my doctor believed I had at least 10 pounds of water weight in each leg. Switching to Venclexta was the only choice I had, but it was a great decision. With Venclexta I have no swelling, and after about 6 months my vision was so improved that I no longer need my glasses for distance. I have no side effects and have been on Venclexta for 3 years and 3 months. I am sure that there are many posts on this site on Ibrutinib and swelling.Wishing you all the best,

Susan

Woodhurst profile image
Woodhurst in reply toMcpill

Hi Susan

Thanks for your informative response.

All the best, Woody

DelrayDave profile image
DelrayDave

Yes. After maybe 3 years on ibrutinib my feet ankles and lower legs became swollen. Doc said it is lymphedema, but who knows? I had to buy a shoe size larger. No pain. Just the swelling. Everyone including kidney doc is aware. Still on ibrutinib.

David

Woodhurst profile image
Woodhurst in reply toDelrayDave

Thanks for the info Dave, Woody

Ginajetta profile image
Ginajetta

I have been on Imbruvica for a little over two years. I have swollen legs and ankles . Some days worse than others.. weight day to day can change by 4 lbs up or down. Wish you the best.

Woodhurst profile image
Woodhurst in reply toGinajetta

Thanks, All the best to you too, Woody

pilantd profile image
pilantd

Greetings Woodhurst,

I've been taking 420mg Ibrutinib since April 2017. In 2018 I started suffering from swollen legs and feet. I resorted to wearing diabetic socks and sometimes had issues putting on my shoes. My oncologist then put me on furosimide to manage the water retention. In the evenings and on weekends I also wear compression socks, which give my lower legs a nice feeling of relief.

Woodhurst profile image
Woodhurst in reply topilantd

Hi there

Thanks for the reply and tips - will try, Woody

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