I’m a 73 YO male on Ibrutinib successfully since 2017
Recently I’ve finally been experiencing some of the side-effects that I was initially warned about - notably cracked fingernails, & bruising. Which is OK, I can handle that.
But more recently I’ve also experienced severe cramping, especially in hands/wrists/lower arms. It’s much like “trigger finger” but in every finger, & extremely painful.
Has anyone here had similar experiences? Any feedback greatly appreciated.
I was on Ibrutinib for 3 years 2018-2021 and from the very beginning I had severe bone and joint pain in my legs, feet, hands and sometimes everywhere (along with lots of other side effects). It was especially bad in the mornings - some days I could barely walk. Coffee seemed to help and it would fade as I got on with my day. My doctor called it "roving joint pain", said it was common, and that it meant the Ibrutinib was working because it was caused by my marrow dumping the bad cells. I was switched to Acalabrutinib last year and the pain reduced a bit. I'm currently off treatment and no more pain and I feel great!
Thanks for your reply. What I found most helpful was that you're now off Ibrutinib altogether; I always assumed I would have to be on it or something similar for life. Do you feel that you are "cured"?
Nope, not cured. I was switched to Acalabrutinib but immediately developed heart problems so I'm off treatment temporarily till they get my heart fixed - then I'll resume treatment. My doc is considering Venetoclax with Rituximab.
HiI had the same experience 4 months after starting Ibrutinib, moved to acalabrutinib immediately and all the issues disappeared.
Thanks for that.
I have been having similar cramps, and shooting pains in my hands and arms. Also just started to lose fingernails. I am untreated except for 20 days on irbrutinib months ago, which I had to stop. The cramps wake me up many times at night.
Yes to the Ibrutinib and painful cramping, especially in my hands/fingers and feet/toes; and occasionally in arm or leg muscles. I notice if I keep my extremities in one position too long eg right hand clutching mouse or holding a book up while reading, the probability of painful cramping increases. Worse if it starts in the middle of the night ! Goes with my A/Fib and other side effects. I don't have a choice to change to another ib.. I've added soluble Magnesium to a glass of water once a day. though not sure how effective that actually is.Cheers
I’ve been on Ibrutinib for a little more than 2 years. I’ve had muscle cramping the entire time, had the dose reduced to 280 mg, and after a short period of respite, the cramps returned. For the past three months they seem to have worsened in spite of lots of water, magnesium supplements, exercise, and massage. A few more side effects have shown up as well. Thinking this must be what toxicity feels like and that it might be time to make a change. From what I read here, people have different degrees of the usual side effects from this drug. I find that I’m weighing the value of the positive results vs the misery of the side effects, and feel that the see-saw is tipping into he negative as time goes on.
I’m 82. On and off Imbruvica 10 years. I did not notice the finger cramping until lately after restarting Imbruvica 420mg daily dosage I appreciate the comments relating to alternate drugs and reduction of dosage. I’ll discuss with my doctor. It’s hard for me to pin down the causes of joint and muscle pain between aging, leukemia, medication side effects and arthritis. Glad I’m still here and kicking!
Make sure you are drinking entry of water. You may want to have your doctor check your potassium. I used to take Imbruvica and had horrible leg cramps at night. The pain would wake me up out of a dead sleep. I finally told my doctor and he checked my potassium. It was really low so he prescribed me some potassium fizzy's and what a difference it made.
Thanks for that!
I had horrible cramps that practically knocked me to the ground while on Imbruvica. I tried everything plenty of water, Gatorade,potassium,magnesium and finally I found the cure. You must buy magnesium bisglycinate it is a miracle supplement. Take one in the morning and one at night. I swear by it ,I haven’t had a cramp in over 2 years.
