Covered with red spots and blotches

[Wranglerls]

Just finished my first month of IMBRUVICA and I am covered with itchy red spots and blotches. Benadryl marginally effective. Most of my torso and arms covered. Will this moderate or go away over time. My cll not active just enlarged nodes in my abdomen.

[AussieNeil Partner Administrator]

Hi WranglerIs,I note that the Related Posts has brought up quite a few posts, beginning with this one, also someone on ibrutinib: healthunlocked.com/cllsuppo...

(You can find Related Posts below or to the right, if on a PC, of your post).

Neil

[db601]

May I know what dose of ibrutinib you are taking?

With frequent labs, you may be permitted to reduce the drug. I am now taking 70 mg daily. It is the lowest dose available.

I started at 420 mg in 2014 -continued with a few drug holidays, bone marrow biopsies and a steady reduction over the years. The AE are sometimes - not tolerable but rash is mostly benign and may pass gradually. I did need to use a cover up facial makeup on the higher dose.

I am sorry you are suffering.

Keep us updated

~ Diana

[Wranglerls in reply to db601]

Yes 420 and Doc said to stop until meet with them next week. Your info valuable. Thx

[Wranglerls in reply to db601]

Thanks for your reply. I am at 420 and had rashes after 1month. I see doc next week and will suggest potency reduction. Prednisone has reduced itch.

[Graham64]

Hi there. I was taking ibrutinib with co-trimoxazole and acyclovir. I got an all-over body rash like you describe. It turned out I was allergic to co-trimoxazole. As soon as that was changed to Azithromycin, the rash disappeared.

[Wranglerls in reply to Graham64]

Thank you

[PaulaS Volunteer]

Sorry about your rashes, Wrangler. Same happened with me as with Graham64 .

I'd already had minor rashes with Ibrutinib but they faded after a few months. Then I was prescribed Co-trimoxazole (about a year after starting Ibrutinib). I soon got nasty rashes that only stopped when I stopped the Co-trimo... The rashes took a while to fade even then, but they haven't returned.

Maybe you're not taking Co-trimoxazole, Wrangler, but reactions to other drugs is something to consider.

Hope you find a solution soon.

Paula

[Wranglerls in reply to PaulaS]

Thank you

[DogmomLM]

I had the same - all over. But - it resolved in about three weeks.unpleasant, but manageable.

Rash

[Wranglerls in reply to DogmomLM]

Wow looks like me....Benadryl helping now. Thx

[Ibru]

My husband had a rash which started two weeks after he started ibrutinib. It lasted three weeks. The oncologist told him to take Zyrtec, which is an over-the-counter antihistamine. He said if he could tough it out it would likely go away and stay away. He has now been on ibrutinib for 8.5 years. I will try to post a picture of the rash. He had it from his neck down to his ankles.

Ibrutinib rash

[Wranglerls in reply to Ibru]

Thank you my rash came at 4th week and is so sever that they have asked me to stop taking it. Will find next steps next week. Benadryl helping in meantime. Thank you.

[CCgroup]

Hi Wrangleris

I have exactly what you describe. Two things that helped are Clobetasol Propionato, and to a lesser degree Fucidin 2% which I applied when the itching became severe. With the Clobetasol Propionato the spots disappeared in less than a week.

I had an appointment with my dermatologist yesterday (of course when I got there the spots had disappeared) and she warned me that Clobetasol Propionate is very powerful and must not be used for more than 5 days in a row as it affect the skin.

Something surprising to me, was that the session of spots before the last one were cured by three days at the beach, where I spent a lot of time in the ocean. The problem here, of course, is the availability of a warm ocean!!

Good luck with getting rid of the problem.

Dan

[Wranglerls in reply to CCgroup]

Wow what story. I am in IN for my cll but am a FL resident. My doc gave me a 5 day descending course of Prednisone and the itch has mainly stopped but still red all over. Yes ago I had a bad case of poison ivy and soaked in salt water too. Worked. Did you restart the offending med when clear?

[CCgroup]

FL works perfectly - you have warm oceans. I live in Costa Rica.