Rash with imbruvica

[Gretsch6120]

My imbruvica caused rash all over body. Took prednisone went away now off imbruvica for awhile and rash seems to return over night not intensely but returns and goes away again during the day. Just started back on lower dose is imbruvica but afraid it will return big time again. Any advice?

[lankisterguy Volunteer]

Hi Gretsch6120,-

I have had a mild rash since just before my diagnosis in 2008. Every time my CLL progressed the rash subsided, and treatment brought it back stronger. Ibrutinib / Imbruvica made it really angry and intolerable, so I tried pausing, but it came back. So I paused for 6 months and then started Venetoclax.

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The rash was tolerable for 4 years on Venetoclax but it kept getting more visible and irritating. Since January 2021 I have sucessfully used Photo therapy (light box treatments with UVB rays) and the rash is dramatically reduced to nearly invisible, with no discomfort.

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You can read about other member's experiences by looking in the box on this page labled:

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Len

[Gretsch6120 in reply to lankisterguy]

Thanks that inf is really helpful

[40fo in reply to lankisterguy]

Thanks for the info! Always helps to know you’re not alone with these side effects!

[Ibru]

My husband had a bad rash for first two weeks on Imbruvica. Went away and never came back. Still on it after 8 years.

[Justasheet1 in reply to Ibru]

Ibru,

8 years?! Hallelujah 🍻

Jeff

[Srli]

I had a bad extremely itchy rash mostly on my legs but also on torso in a few spots when I first started ibrutinib. In researching it, I found that this is common and can take one to several months or more to resolve. In discussion with the doctors I decided to try to suffer through with use of cortisone cream and benadryl gel. They offered to let me take a break but also told me there was a chance that it would recur when starting ibrutinib again. It started to resolve in a month but took two months to fully go away. It was tough. Your rash sounds a bit different so not sure if is the same cause.

[Gretsch6120 in reply to Srli]

Tks