Has anyone developed a horrible rash while taking ibrutinib

[Center]

On my third week of ibrutinib and have developed a terrible rash that has covered my body. Is this normal for others as well?

[Cllcanada Top Poster CURE Hero]

Have you notified your doctor?

In clinical trials a rash was noted as an adverse event in 27% of patients...

Source... the FDA drug label...

dailymed.nlm.nih.gov/dailym...

[Center in reply to Cllcanada]

Yes, it was over the weekend.... The on call Dr said to Benadryl ...... And that a rash was in fact a good sign. The Research leader the next day restated to take Benadryl.. I was just curious if others on the trial had experienced this as well.

[greygirl in reply to Cllcanada]

wow did I! when I called diplomat pharmacy because was weekend and had rash looked like sunburn on palms a bubblelike thing on left wrist then appeared on right wrist rash moving up arms after only 2 days on ibrutinib itched and burned like crazy they tried tell me it wasn`t from ibrutinib told me go hospital anyway went and ER doc thought had serious skin disease(wrong!) gave me iv steroids took hours stop itching finally dermatologist another hospital 7 hours later said from drug stopped for 5 days started at 2 tabs rash came back but this time attacked any area near joints-feet,hands,knee-red hot spots swelling,pain tried go to3 tabs this dose adjustment went on for almost two months using benedryl ,aleve aspirin anti itch cream,cortisone cream even Percocet pain swelling got worse to point couldn`t stand pain any more so had go off too bad because I had tremendous energy but every day either couldn`t walk or use my hand

[Mick491]

When I wss on FCR treatment in the third treatment I was covered all over in a rash similar to hives. I also had a temp of 39 C and was admitted for 3 days. The cause was put down to methotrexate injections I was taking for arthritis. Are you taking any medication for other things that may conflict. Keep an eye on your temperature to. Advice I was given was anything above 38 C contact your doctor. Hope it gets sorted soon.

[hanskloss]

I have developed a flare up of guttate psoriasis head to toe after 4 rounds of FCR...what does your rash look like? I have been told by dermatologists Rituximab can indirectly cause all sorts of body rashes but do not know about ibrutrinib ...

[canadagoose]

I got it from head to toe. My doc didn't understand it so stopped the meds. Restarted a week later along with benadryl. It came back a bit, but after a few days I could decrease then finally stop the benadryl so I wasn't a zombie. Now, a month on, I look normal.

[Center in reply to canadagoose]

Hi... Don't know how to work sight very well just signed on last night .... But thks canadgoose, that's incouraging....

I have only taken ibrutinib and will start my first round of (r) in 10 days.....I'm in a phase 111 trial with that only..... Other than the rash I feel terrific. My nodes are almost completely gone.... My energy is great.... My biggest problem going in the trial was my extremly high white count which was bordering at 380,000.... I know right ,high !!! S0 I am hoping its because those are circulating in my blood and causing the rash.

[FlaKeys in reply to Center]

Hi. How are you feeling now? All well I hope. My husband is on the same regimen and I wonder if you have any tips or comments. Thank you.

[Center in reply to FlaKeys]

Hey Flakeys, the rash did clear... I was what is considered stage 3 and had such a high white count they believed it was simple the thinning if the blood with the first stages of it leaving the body I guess .

Most all the side effects have went away except for some heart palpatations. I'm going into my 2 year.

I did have a round of pneumonia was hospitalized but it cleared up quickly.

Wishing you well so blessed to have been able to be in the trial myself I have continued to work ,and do well.

[FlaKeys in reply to canadagoose]

Did the skin also look sunburned a little, or did you just have the dots and spots? Thank you so much!

[canadagoose]

Look at the discussion in this article. nejm.org/doi/full/10.1056/N...

My counts went from 85000 to 115000 in 2 weeks, but as you said, no nodes. Waiting for the counts to go down, but as you said, I feel good, have energy. This is great!

[isambard]

What you probably have is petechia . I have the larger version called purpura, which are purple 'bruises' on my arms some as big as 5 or 6 cms. Both are caused by decreased platelet counts according to Wikipedia and by the action of collagen according to my consultant ( I don't really understand this). Apparently there is nothing that can be done about this unsightly condition ( have given up long sleeves for summer). Not sure Ibrutinib is entirely to blame as I had some petechia before I started Ibrutinib when I was on Ofatumumab. Anyway they don't hurt or itch and I feel really well, nodes have decreased and no other side effects, so well done Ibrutinib!

[Center]

Isambard how long did your purpura last mine is hideous

[isambard]

Still have it on one arm but it seems to be fading a bit. Consultant says it should go now as my platelets are back to normal. I agree it does look pretty awful and it's embarrassing sitting next to people on trains and buses etc.

[Center]

Hey Isambard..... The purpura finally has faded....and my blood counts are now all normal. It took one month. I have had the second round of retuxan and continuing the ibrutinib and feel good. Quite possibly the sudden drop in keukemia cells( 380.000) to (8) may have caused the rash. Never want it again.... Thanks for your earlier post made me feel better about it

[Hidden]

The rash I have is a bunch of skin colored lumps around my middle and under my arms. The skin doc said it was an extremely rare skin condition (never seen before in California) Fibroelastologic Papulosis. I researched further and found that is only ever found in asian men. I am neither. It appears to be slowly spreading and seems to be starting on my chin so I'm looking to see how others are dealing with rashes. Has anyone reduced the dosage from 420mg a day to see if that helps? I've been taking it for over 2 years now and all 20 odd side effects seem to slowly getting worse. But I am definitely disease progression free so want to stay on Ibrutinib.