Bruises & Rash: I have been taking 140mg of... - CLL Support

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Bruises & Rash

brooklyn7672 profile image
9 Replies

I have been taking 140mg of Imbruvica for 3 months and I have been breaking out with lots of Bruises which have been manageable. Any suggestions to keep them at bay.

Also, for the past few days, I've broken out in with a really bad rash around my neck. Is this common and if so, I've tried Benadryl but that hasn't help. Any suggestions.

Finally, I have had really achy bones for the past few months as well.

Rosa

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brooklyn7672
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9 Replies
Jemorgen profile image
Jemorgen

Hi Brooklyn - I have no experience with ibrutinib but I’ve certainly heard lots about it causing bruising and aches. Hopefully others will have good advice for managing your symptoms.

Heather S

AussieNeil profile image
AussieNeilAdministrator

You are in the early days of taking Ibrutinib and most side effects improve considerably over time, as the paper Zia2 just posted about shows in the Visual Abstract:

healthunlocked.com/cllsuppo....

Others have shared their tips in the Related Posts below, so I hope you find these and perhaps some patience will see your side effects fade away. If not, switching to Acalabrutinib may help with the aches and rash.

Neil

lindalou5 profile image
lindalou5

I also was going to suggest that you might switch to Acalabrutinib. I had hemotomas and they never did quit coming.. there have been none on the Acal.

wmay13241 profile image
wmay13241

Bruising could be caused by low platelets due to Ibrutinib.

W00dfin profile image
W00dfin

As Aussienell says this is early days. My achy bones became less painful and less frequent after the first few months of Ibrutinib but never completely stopped. The bruising never stopped even after I had to stop Ibrutinib but it was almost entirely on my forearms. Might be age (69) related too.

newyork8 profile image
newyork8

So you are on 1/3 the standard dose? My bruising was minor and has gotten much better. The drug is a blood thinner. I do note minor excema which can present as a dry rash on my knuckles and back of knee. I use an RX lotion. Small price to pay for life saving drug.

Fant1924 profile image
Fant1924

Low platelets is the cause of the bruising/bleeding under the skin. There is a drug named Nplate but I think it is for folks with really low platelets, <50, I think.

There are suggestions online to raise platelets but not sure how effective. I am trying several and mine are hanging just over 100.

Good luck and if you find a solution lots of us would like to know.

Dennis, 73, Venetoclax

ladyprescott profile image
ladyprescott in reply to Fant1924

No Dennis. Low platelets is not the main cause of bruising, the blood thinner in Ibrutinib is the cause. My platelets are normal and I have severe bruising between my elbow and wrist ALL of the time. The slightest bump and there they are. Carole

For me: little red dots usually in a line randomly appear, bruises of various sizes randomly appear, once in a blue moon I get unexplained bleeding

Random bone pain is persistent. It’s most frequent in my thumbs, shoulders, and bottom of my feet, but has been felt everywhere at one time or another. While there is tolerable soreness and pain, it’s sometimes accompanied by numbness or a feeling of freezing cold.

For me: a feeling of mild to severe fatigue is there everyday, periodic dizziness, blurring vision, mental sluggishness, memory issues, reduced endurance, periodic breathelessness

It’s tolerable, but the ability to hold a job, take care of projects around the house, stay productive, that’s a challenge

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