Petechiae rash on lower legs due to ibrutinib?

[jdolinger]

Morning everyone

I am new to the group but have been actively reading and sometimes replying to posts. Thank you everyone for the informative discussions and empathy shown by everyone. I have been on 420 mg of ibrutinib for five weeks now and have slowly been weaned off prednisone (now down to 5 mg). This is may second bout with CLL and anemia in two years and thus the reason my Hematologist put me on ibrutinib. As soon as the doc put me on ibrut. I started developing what I believe are Petechiae spots on my arms and hip and a few on my legs. They don't itch; doesn't burn and are painless. Recently in the last five days my entire left lower leg is covered in the Petechiae (see photos) and my leg is quite swollen.. (I don't want to call it a rash as it does not itch and is not rough to the touch). Showed it to my doc's nurse yesterday during my weekly blood check and she immediately sent photos to my doc. He had last week sent me in for an ultrasound to rule out DVT (deep vein thrombosis) which they did rule out any clots. BTW after five weeks on ibrut. my blood counts have really improved. WBC down from 187 to 128; and others improving significantly. Haptoglobin back in normal range, etc.. Question is, has anyone else had this experience of vast amounts of petechiae and what has been done about it? Thanks

Jack O.

[Hidden]

I had it ALL over my body. and i mean all over. I was given a methylprednisolone dosepak. after about 3 weeks it was mostly gone.

[cllady01 Former Volunteer in reply to Hidden]

Ivotedfornixon, was your event before or after being on Ibrutinib--just didn't know you had that experience and couldn't find it in your past posts/replies--not that it might not be there, just couldn't find it.

I ask because you are a rare PLLer on this site and was wondering if that makes a difference in one getting the response with Ibrutinib.

[Hidden in reply to cllady01]

it started about 10 days after i started ibrutinib. I also received a prevnar 13 shot,and a flu shot on the same day i started ibrutinib. about 14 days later(it started at about 10 days) I had it all over. mostly petechia but also some hive spots-or at least they looked like hives. the only place i did not have it was in my private area. some on face-some on tops of feet otherwise everywhere. at the 15 day point after starting imbruvica-not starting the rash i went on methyprednisolone 6 day dosepak. about 2 weeks later i was clear.

[cllady01 Former Volunteer in reply to Hidden]

thank you, that is very helpful information.