I have just recently broken out in a rash/hives in both arms, left leg and stomach area. Some of them are very itchy and others are just pimple like with no itchiness.
The GP says it is not Shingles and is a reaction to something but will have to ask the hematologist as to their opinion.
I take sub cutaneous IG weekly since June and 420mg of Ibrutinib daily since mid July this year.
Everything was fine until this happened starting Monday
I am unmutated and 11q deleted. Prior to taking ibrutinib my wbc was 300 and lots of swollen nodes. While the nodes have all disappeared the wbc is slowly coming down at approximately 170 as of the last blood draw.
My question to the community is has anyone else experienced rash and if so does it go away over time?
The swollen nodes were not pretty to look but they did not cause any problems. On the other hand the severe itching does make things uncomfortable almost all the time.
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Murman
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I developed a rash while taking ibrutinib. It is on both lower legs and top of feet. My doctor Rx antihistamine which didn't work, only gave me dry mouth so I stopped taking it. Mine does not itch or bother me. I still have it after switching to Alacabrutinib.
You might want to send a private message to lankisterguy (len) in case he doesn’t see this. I think he is the member perhaps most knowledgeable about this topic.
I broke out in a rash initially on top of my feet 2 years ago. It eventually faded and I put it down to Dermatitis Herpetiformis as I am Coeliac (and it’s related to Coeliac disease) and I must have accidentally ingested some gluten. But I am gluten free and over this year, this same rash has spread to my arms, legs, torso and in places on my face. It’s just a low grade looking rash that isn’t generally itchy but it’s systemic. It brightens a bit then fades some, but never goes. I was only diagnosed with CLL 2 weeks ago but have possibly had it brewing slowly for a few years. My GP thinks the rash is related to CLL. I gave my Haematologist a list of general things wrong - including the rash - but he hasn’t mentioned it and I forgot to specifically ask him about it. I will next time I see him in January. Actually nobody seems to know exactly what it is. I’m on “wait and watch” so not taking any drugs at this stage. Just thought I would pass this on. 😊
I have never had a rash but itching. Are you on Co-Trimoxazole ( Septrin ) as I was told that was the cause of my itching. Suggest you ask for a referral to a Dermatologist. Mine is not as bad as it was but I still have it sadly.
I have exactly the same symptoms on co-trimoxazole no rash but itchy scratchy fever especially when warm haematology says steroid cream can be used if it gets unbearable. Tony
I found the steroid creams had no effect. Working my way through various dry skin lotions. Also take an antihistamine every morning and Hydroxyzine Hydrochloride ( from dermatologist ) every night. Not sure if it helps but I sleep like a baby.
I'll swerve the steroid cream, try antihistamine as haematology suggested but process of elimination made easier by your knowledge/experience thanks very much for your time
I started applying a prescription steroid called Clobetasol ointment in a small area. It has gotten rid of the itch but still very red. Will see what happening a few days
Has what you’re experiencing been seen by your oncology team? It could be a potential side effect of Ibrutinib. I experienced itchy, hives at times while on IBR (and also have the same prognostic indicators as you.) I suggest you call your oncologist and ask if they have an oncological-dermatologist where you’re being treated. The one I see knew immediately what it was.
Here’s my disclaimer: I’m not a doctor - but mine told me for mine an easy OTC fix - BUT you need to first check with your oncologist and ensure you can take it under your drug protocol - plus ensure you are not allergic to it: Benadryl
Please let your CLL doctor know about this, it is a reported side effect of Ibrutinib.
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And if it does not subside with topical treatments like moisturizers or topical steroids (Hydrocortisone creams OTC google.com/search?q=hydroco... ) , and your CLL doctor agrees, you may want to try a pausing Ibrutinib for 1-2 weeks to see if the rash goes away. If it does you may want to explore switching to Acalabrutinib / Calquence.
I just had the same issue that you describe pretty much exactly what you say, except no itching. Doctor didn't know what it was, oncologist didn't know, dermatologist wasn't sure either. I had a tooth pulled prior to this and then was taking antibiotics for 5 days so my guess was did the antibiotic somehow interact with the ibrutinib even though I stopped the ibrutinib three days before the tooth being pulled. Yes it eventually goes away and in my case it took several weeks to go away. When my white count was at 132 and no node issue, my oncologist put me on ibrutinib and then my white count went up to 302 and I was very sick and in the hospital three different times. And that's where it was explained to me that the white count when you start the drug is normal for it to go up and then it will stabilize and start back down and that was a little over a year ago and from 302 it had gone down to 16. And then last blood test it went back up to 19 which was the first time that it did not go down. Oncologist suggested get another blood test in a month and if it goes up again along with the absolute lymphocytes which both had gone up about that amount then that would mean the ibrutinib is not working anymore and they would need to have me go on a different medication. If anyone could comment on this I would appreciate hearing it. I hope this helps you feel better about your situation Murman.
Thank you! I found your comment with regards to antibiotics interesting. I was on an portable IV antibiotic for a week and pills for two weeks for suspected cellulitis. I finished the antibiotics a couple of weeks ago. I continued Ibrutinib without any interruption. Given your experience it makes me wonder if the 2 drugs together can cause problems!
During several days I had irritation and hypersensitivity and pain on the right side on which I have sometimes "post herpetic neuralgia" - which is the nerve damage for years after shingles. In my desperation I applied some old fashioned Metholatum - and all symptoms disappeared immediately.
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CLL and Hives
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CLL Rash
2+ years on Ibrutinib and a question
Completely bonkers!
