Very low platelets. : My son stopped Ibrutinib... - CLL Support

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Very low platelets.

karenmarie profile image
4 Replies

My son stopped Ibrutinib and started Steroids two days ago because his platelets went down to 20 and the doctor has to figure out if it's from Ibrutinib or the CLL. Now he has bruises everywhere. Big ones like crazy.

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karenmarie profile image
karenmarie
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AussieNeil profile image
AussieNeilPartnerFounder Admin

When platelets are in the range of 20 to 49, the risk of bleeding without injury is increased and as you've observed, spontaneous bruising will be seen and mostly on the arms and legs.

Hopefully the steroids will lift your son's platelet count. If they drop much lower, his doctor may consider platelet transfusions, but these tend to be avoided because the transfused platelets only last 4 to 5 days.

You mentioned a month ago that your son's neutrophil count had also dropped but was OK. Maintaining an adequate level of neutrophils is very important to avoid infection risk, mainly from bacteria and fungal infections. How is that trending?

This must be a very worrying time for your both, so I hope that the cause of his poor counts is quickly identified and righted.

Neil

karenmarie profile image
karenmarie in reply to AussieNeil

Thank you AussieNeil for your so prompt reply! I really do appreciate.

About the other counts, my sons says they are OK, it's just the platelets. They have come down to 20, the lowest he had was 50 last November.

So he has to stop Ibrutinib again and go on Dexamethasone for a week. Second day into Dexamethasone to date and he is bruising everywhere. Mainly lower the body. I assume it's gravity...

Thanks again.

walkingspirit33 profile image
walkingspirit33

Hell and welcome to the site Karen-Mary,

I have been on Imbrutinib for almost 8 mos. now.I also have bruises mostly on arms and hands but also elsewhere as well.Pretty ugly looking ones .Most people shy away from me because of them.Some of the things said and done have been hurtful at times.When i asked my onc.:he said that imbrutinib as well as the cll inhibit the platelet bonding action.Although I have plenty of platelets and because of this bleeding as well as subcutaneous bleeding (bruising) happens. It hasn't been severe, just a might ugly and worrisome .It does seem if I look at my hand the wrong way I get a bruise ,lol.I am not worried about the bruising, just the neg. reactions and treatment from others.

I hope your son ,understands these reactions and the reasons for them.It really has nothing to do with him;it is just people's misconceptions.

karenmarie profile image
karenmarie

Thank you walkingspirit33 for your reply. I am surprised that you bruise even though your platelet's count is good. Such is not the case for my son unfortunately and it can be dangerous. But as AussieNeil says, the steroids will lift my son's platelet's count, and this is what matters.

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