Severe shin pain : I have been on imbruvica for... - CLL Support

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Severe shin pain

Captaintalbert profile image
12 Replies

I have been on imbruvica for about 2 months. After about 2 weeks I had a horrible rash everywhere. Stopped taking it for a couple of weeks while I was on Predisone. I have been back on it for about a month 420 dose. Now my shins just on the outside feel like they are bruised and very sensitive to the touch. It is hard to walk. Severe pain when I first stand up. Every step feels like I am stretching out a muscle in my shins along the bone only on the outside. The inside of my shins feel perfectly fine. It is from my knees to my feet. I feel the stretching in my ankles also but only on the front of them. By the time I walk across the room the pain has subsided enough that I can walk but still feel it every step. They are still very sensitive to the touch. Has anyone else had this happen to them and what was the treatment to get rid of this?

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Captaintalbert profile image
Captaintalbert
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12 Replies
lankisterguy profile image
lankisterguyVolunteer

Hi Captainalbert, -

There were several recent postings about Ibrutinib and skin rash- here is one along with the "Related Posts" to others

healthunlocked.com/cllsuppo...

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Regarding bone or pain in extremities, please look for the box on this page labeled:

Related Posts

*Pain moved down from shin to toes healthunlocked.com/cllsuppo...

*Severe pain in hips! healthunlocked.com/cllsuppo...

*On w&w but have developed severe pain healthunlocked.com/cllsuppo...

*Severe pain so may have to stop Ibrutinib healthunlocked.com/cllsuppo...

*Severe Joint, Muscle and Bone Pain After Last Infusion of Obinutuzumab/Gazyva healthunlocked.com/cllsuppo...

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There have also been past discussions of tendon issues after taking the antibiotics Cipro / fluroquinnones

see: webmd.com/osteoarthritis/ne....

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I hope this broad brush answer can help you find further clues to discuss with your doctors.

-

Len

Captaintalbert profile image
Captaintalbert in reply to lankisterguy

Thanks for the reply.

wilhoitaz profile image
wilhoitaz

The breaking of the egg part of recovery-went through identical situation-Dr permitted any topical crème I could find- I used them all-my wife's arms almost fell off -she was rubbing something always--The worst of it is the poison getting kicked out of bone marrow into your blood-horrific WBC counts means it is working--After about 6 weeks I was in back yard-the pain (unlike anything I have ever had) stopped for around 20 seconds-I cried like a bab y-first indication that pain could stop and go away-It was on its way out--if pain hasn't slowed down yet-it likely will begin to go away--you have paid your dues!

LeoPa profile image
LeoPa

Are you sure it is the shin and not a layer of tissue on top of it? I mean if your bone hurts it should hurt all around right? Do you feel any pain under your calf muscle? On the back side of your shin bone? I have difficulty understanding how can one side of a bone hurt while the other side not. Could it be severe tendon and muscle pain?

Captaintalbert profile image
Captaintalbert in reply to LeoPa

I agree with you. You can push down on my shin from my knee to my ankle and no pain. Move to the outside just off my shin bone. Oh my goodness lots of pain. Even lightly touching from my knee to my ankles is bad. When you get over to the outside of the shin, around the back over the calf and back to my shin bone on the inside no pain. Top of my foot and the front of my ankle has pain. It’s like it is severely bruised which I have done nothing to cause that. I also have swelling in my right leg and foot.

Lisa-1959 profile image
Lisa-1959

I didn't have the rash or shin pain while on ibrutinib, but various parts of my body swelled & hurt...left knee, then base of right thumb (hurt so bad I couldn't change gears in my car), then bottom of right foot (hurt so bad I could barely put weight on my foot), then left hand/middle finger (great difficulty typing), then top of left foot, then inside of right knee, then left big toe joint. In other words, lots of pain that kept moving around.

Unfortunately, I feel sure the shin pain is due to the ibrutinib. The only thing that helped me was prednisone, but my oncologist didn't want me on it long term. Eventually my oncologist took me off the ibrutinib...was switched to venclexta which was much kinder to my body.

Captaintalbert profile image
Captaintalbert in reply to Lisa-1959

Thanks for the reply. They took off it and going to reevaluate my condition. The pain has not changed but it has only been 4 days

Lisa-1959 profile image
Lisa-1959 in reply to Captaintalbert

I also experienced a lot of bruising/hematomas which were painful and slow in healing. Glad your doctor is re-evaluating your situation.

Catnap7 profile image
Catnap7

I had the same problem about 48 hours after taking my first dose of Ibrutinib. It alsoaffected my knees. Every morning I had to stretch my I.T. bands and my shin muscle

the Tibialis Anterior... Also made sure as I walked my weight was NOT on the outside

of my foot because that makes the lateral side even more painful .

Did some simple wake up to my arches toes and ankles and the pain went

from "I could hardly walk" to " it was tolerable" to "it was gone". Wish the rest of

Ibrutinib's blessings had been on that end of the scale. Hope it lightens up for you !!!

Catnap7

Captaintalbert profile image
Captaintalbert in reply to Catnap7

Thanks for giving me that information

Catnap7 profile image
Catnap7

Sometimes when there is pain to the upper lateral shin the person is not making contactwith the base of the big toe in the push off phase of gait...it is an alignment issue that can even cause knee joint pain. My knees are trashed from dancing professionally

Ibrutinib seemed to pick that up and caused a lot of havoc It seems to attack our more irritated vulnerable areas. Sure hope it fades quickly

Catnap

country76 profile image
country76

Yes. Severe knee pain, rash all over legs and feet. Stopped due to swelling in all joints and was on prednisone. Then back on ibrutinib. Knee pain and rash continued.

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