I'm new here; question about ibrutinib and rash

[CDavis]

Unfortunately, I had to start treatment with Ibrutinib on March 8 2020, after 3 years of watch and wait. Two weeks after starting the Ibrutinib I broke out in a severe itchy, red rash ( pretty much my whole body), so I was on Prednisone for 6 days and stopped the Ibrutinib. Then 1 week post Prednisone we started on the lowest dose of Ibrutinib, but I broke out in a bad rash again after only one dose. (sigh)

I am IGVH unmuted , but I have NO CLL markers showing up in my blood work (which I think is weird, i.e. There is no evidence of trisomy of chromosome 12 or deletions of loci ant 11q, 13q or 17P). I am currently waiting for the Oncology team to get back to me to see what the next steps will be.

Has anyone had a severe rash while on Ibrutinib and what was the treatment or did you change medication? If you changed your medication, what was it changed to?

Thanks in advance for any information.

[Hidden]

my entire body was covered. I took a prednisone pack for 6 days. and kept taking zyrtec(antihistamine). I did not stop Ibrutinib for any time period. after about 6 weeks it was gone.

[CDavis in reply to Hidden]

Were you itchy at all with the rash? I was on the Prednisone, 2 different antihistamines and Betamethasone cream as well.

[Hidden in reply to CDavis]

i was not itchy overall but a few small patches were itchy.

[lankisterguy Volunteer]

Hi CDavis,

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I've had a mild rash since diagnosis, but Ibrutinib ramped the rash up to barely tolerable. We paused Ibrutinib for 4 weeks, the rash subsided but as soon as Ibrutinib was restarted the rash came roaring back, so we stopped Ibrutinib permanently.

6 months later- June 2016, I started Venetoclax and it works great for me.

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If you look for the box labeled "Related Posts" on this page you will find that there have been many previous discussions about Ibrutinib and Rash:

Related Posts

*brutinib and a rash

*Ibrutinib & a Rash

*Extreme Rash With Ibrutinib

*Terrible rash over my face on new Ibrutinib tablet

*I'm new here - CLL and Ibrutinib

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That box is in the upper right column on computer screens or scroll way below on mobile devices.

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Len

[CDavis in reply to lankisterguy]

Hi Len; thanks for responding. Just grateful to know that I was not the only one with a severe itchy rash. I hear will from my Oncologist on April 17, so we'll see what she has to say.

[Hidden]

I have no experience with the medication provided you. I was given rutuximab for my CLL, after several weeks of taking Prednisone, which continued following my last chemo experience. I have never experienced rash from anything given me for my CLL. I really cannot help you but I wish I could. I wish you all the best.