Petechiae: I have an indolent (is that possible... - CLL Support

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Petechiae

ElMaga profile image
7 Replies

I have an indolent (is that possible? doc calls it that) CLL. stable; normal labs; on ibrutinib (280) since 12/2019. I have increased petechiae on my legs; it wanes and then increases. No one has a good explanation for me. Is it the CLL? the ibrutinib? both? when should I be concerned? any insight would be useful. I see my doc in January again but would love peace of mind.

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ElMaga profile image
ElMaga
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AussieNeil profile image
AussieNeilPartnerAdministrator

All BTKis have an off target effect on the kinase in platelets affecting clotting effectiveness. You haven't shared your platelet count, other than noting you have normal labs, but it's not unusual to have petechiae and even some bruising when on ibrutinib. So while you might take some comfort from this, you should still ask your doctor about this next month.

Neil

ElMaga profile image
ElMaga in reply toAussieNeil

thank you. Platelets are fine doc says (262-278 generally); never lower or higher. are those okay? getting labs Tuesday and will definitely ask Doctor; you are always so helpful. appreciate.

AussieNeil profile image
AussieNeilPartnerAdministrator in reply toElMaga

Your platet count is excellent, so it's probly the off target effect of the ibrutinib causing your petechiae.

Islandvibes profile image
Islandvibes

I have same thing it started after taking Imbruvica so I think it’s from meds

BeckyLUSA profile image
BeckyLUSA

I have it as well and I am only on 140 mg daily. I call it my little reminder that I have CLL, since all other aspects are good right now!

PXPXJ profile image
PXPXJ

I developed petechiae on my legs about 4 to 5 months after I started taking the Ibrutinib pills. After seeing my doctor, he changed me to acalabrutinib (Calquence) and the petechiae is no longer an issue for me.

Vlaminck profile image
Vlaminck

I was going to respond but then saw that your post is apparently not locked to this community (as in, I found it with a quick google of petechiae ). Might want to go back and lock it to this community (I have been the worst offender and so often forget).

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