Ibrutinib as a frontline treatment for nearly ... - CLL Support

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Ibrutinib as a frontline treatment for nearly 3 months. Have just gotten over acute back pain but now have pain in left ankle. Any advice?

SkiStMoritz profile image
6 Replies

Ankle swollen.

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SkiStMoritz
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6 Replies
lorna222 profile image
lorna222

Hello Ski, I have been on Ibrutinib for about 4 months and the pains and weird issues are ever changing! For awhile I woke up with itchy feet, I mean REALLY itchy as in could not get relief. Then, the same with the palms of my hands....that lasted 25 minutes and gone. Last night my left knee was really painful, this AM gone. Hot flashes got better, then worse, now better. Fleeting issues sort of strange for sure. I have chronic back pain and just sort of live with it. Sometimes better other times very, very painful with spinal stenosis.

My advice with little experience is to hang in there, hopefully it will pass as my odd side effects have. Sometimes, by the time I tell my Dr. its gone. I will add though my blood pressure is consistently UP! I have never had high BP - but now I do, due to the Imbruvica. My Dr. will likely put me on meds for that:( It still beats the traditional chemo that is for sure! Best of luck!

Lorna

TimHB profile image
TimHB

Since starting ibrutinib 8 months ago I've had what they call "roving joint pain" which my docs consider to be expected. I've had it in my elbows, wrists, hands, knees, ankles and feet - less often in my hips, shoulders and spine. I'm told it means the ibrutinib is working so I kinda welcome it. I take a lot of Tylenol. When it's been particularly unbearable I've found CBD oil helps. I use pure CBD with no THC (available at any grocery store in California) - a few drops under the tongue at bedtime helps alleviate the pain so I can sleep.

Ginajetta profile image
Ginajetta

Hi Sky I started imbruvica in september dealing with similar roving bouts of joint pain similar to lorna222 and TimHB. Hang in there .. it comes and goes.

Havemercy profile image
Havemercy

Yes I have had some fleeting joint pains- lasting a couple of weeks each time but not so much in the last two months (on Ibrutinib for six months now).

thompsonellen profile image
thompsonellen

I've had roving joint pain, with my left ankle being cranky at the moment. I find that drinking more water helps.

Canuck901 profile image
Canuck901

As the Cll is flushed from your bones I would expect some bone and joint pain. Also are you on the first Gen or 2nd gen version of ibruntbib?

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