My husband was diagnosed with CLL in Jan 2019. He began on daily Ibrutinib about a year later. About a year ago he started having severe itching that makes him crazy. He will occasionally get a bug bite and those seem to never go away and the itching never end - lasting well past a year! He has been to the doctor and dermatologist yet no one has advice or remedy other than the usual itch creams - those don’t seem to help.
I am wondering if there is some kind of side effect from Ibrutinib that we aren’t thinking of. Does anyone else have this type of issue?
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You might find this case study Ibrutinib-Induced Skin Rash of interest
"Although ibrutinib is a highly selective BTK inhibitor, it exerts off-target effects on other kinases like epithelial growth factor receptor (EGFR) leading to inhibition of cell cycle progression and increased apoptosis. The inhibition of EGFR appears to be the most likely mechanism of ibrutinib-induced skin rash. Another proposed mechanism of ibrutinib-induced drug eruption is via inhibition of c-kit and platelet-derived growth factor receptor [2,3]. So far, few case reports, mostly in Western populations, have reported three types of ibrutinib-induced skin rash: a leukocytoclastic vasculitis-like pruritic violaceous palpable purpura, painless non-pruritic edematous papules with centripetal spread, and a third variety of asymptomatic non-palpable petechial rash [1,3]. Almost all of these were grade 1 or 2 in severity and were treated symptomatically with topical steroids and antihistamines without discontinuation of ibrutinib. To our knowledge, this is the first report from India where ibrutinib caused severe skin toxicity that required drug discontinuation and the mechanism is most probably due to hypersensitivity as there were abundant eosinophils in the histopathology specimen."
I have severe reactions to bug bites now as well - though I think this actually started after my diagnosis and before starting ibrutinib - so I wonder if it is somehow due to my CLL and it is just a coincidence that it seemed to become more severe or frequent after starting ibrutinib….? My reactions don’t last for such a long time, though - certainly not a year. At any rate, I haven’t found an effective treatment for the itch, blisters, etc - I just douse myself in DEET repellent when outside in the summer to try to prevent bug bites as much as possible. 🙁 I hope you find some answers!
I have experienced Petechiae and occasionally mildly itchy skin and plaque psoriasis since 2006, but Ibrutinib really made the rash strongly itchy.
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Over the years I've had many biopsies; dermatologists and pathologists postulated Psoriasis, Eczema, drug reactions, and more recently CTCL or Mycosis Fungoides. My CLL expert doctor thinks that my refractory HHV6a infection is the cause.
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The common result from a top expert skin pathologist that ran flow cytometry on the biopsy, was finding many T-cells and CLL cells in a specific layer of my skin. But the puzzle is why they are there.
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Our archives have over 441 postings that mention rash:
SNIP: "Cutaneous lesions occur in up to 25% of patients with chronic lymphocytic leukemia (CLL). These can be caused by either cutaneous seeding by leukemic cells (leukemia cutis, LC) and other malignant diseases or nonmalignant disorders. Skin infiltration with B-lymphocyte CLL manifests as solitary, grouped, or generalized papules, plaques, nodules, or large tumors.....The most common secondary cutaneous changes seen in CLL are those of infectious or hemorrhagic origin. Other secondary lesions present as vasculitis, purpura, generalized pruritus, exfoliative erythroderma, and paraneoplastic pemphigus. An exaggerated reaction to an insect bite and insect bite-like reactions have been also observed".
Here is a 2023 article on how the immune system reacts to skin injury or causes autoimmune reactions:
My most successful treatment was Photo therapy (lightbox treatment with UVB rays 3X per week- similar to a stand up tanning bed, but with medical precision on light frequency and duration).
The psoriasis & seborrheic keratosis is in full remission and I only need 1 treatment per week - a total of 8.5 minutes exposure to keep it under complete control.
I had a really intolerably itchy rash on my scalp some three months after starting on Ibrutinib. The topical cream I was given to the Dermatologist made hardly any difference. What made it change was that my haematologist lowered the dose of Ibrutinib. I went from 420 mg a day to 280 mg a day and then very soon even lower to 140 mg a day. I was also given antihistamines. With these measures the itching and inflammation gradually subsided and did not return.
I also have bad reactions to mosquito and other insect bites but manage them better these days by taking an antihistamine during the summer period and by using a strong cortisone cream , called Clarelux in France, which I dab on the bite as soon as I am bitten. I have to repeatedly keep applying that cream for a day or two, and then can stop. I carry the cream with me wherever I go. I also wear protective clothing.
Wishing your husband all the best in finding the way forward with these problems
thanks so much!! He too has used many topical cremes and it works for a bit but always comes back. We will explore the lower dose idea with his doctor - maybe that will help!
had bad rashes from Imbrutinib two times and always had bad. Reactions to bug bites. Had to go on steroids both times. Since switching from Imbrutinib to VO after then getting AFIB this all went away.
I have a similar story. Started Acalabrutinib for B-Cell CLL last April (diagnosed the year before). Itching started one year after that, April this year. Mentioned to Clinical Nurse Specialist (CNS) team at UCLH Macmillan who advised antihistamine tablets, Loratadine or Cetirizine. Cetirizine may cause urine retention which is bad given recent prostate cancer treatment so tried Loratadine - which seems to have worked, itching much reduced (but not totally gone). Will try going off this in a week or so and see what happens.
Good morning. I was diagnosed with CLL in September of last year. I immediately began both the pill and IV chemo(s). I know for a fact that I had CLL probably six months earlier, but showed no signs whatsoever except itching and burning whenever I went out in the sun for prolonged times.
The only thing that helped me and I found out by accident is I happen to get a small burn that I got from not maintaining a grill properly and when I applied a alocane, maximum strength “emergency burn gel“ the itching went away immediately. I then got smart and learned to combine some of this, as it is rather expensive with regular cream lotion, and applied it and that also worked.
Anyway to make a long story short regarding my chemo, I showed very good response so they stopped the IV January of this year and I will be on my last pill chemo in a few months.
Now that I have almost completed both chemo‘s I have no itching issues other than very dry skin on my skull and forehead. The lotion that I use sparingly on the top of my head and forehead is similar to the look and texture of olive oil.
Now that my cancer is in remission, I spend more time reading about other issues that people are having, and I believe that along with the cancer, your skin is affected greatly.
Wow great idea!! We will certainly try that! Yes we have also noticed that his overall skin since being diagnosed and treatment that his overall skin is much dryer in general. Thanks again for the input!
I have been having the same problem for some time. Scratching causes bruising mostly on my arms. Steroid creams don’t seem to help. The best relief I’ve had is putting on CeraVe moisturizer then putting on Neutrogina body oil on top. The oil seems to hold in the moisture without feeling too oily. I hope he is able to find some relief.
Hi! I itch all of the time on my back. I started with Inbru 2017 and after a month I had hives EVERYWHERE. Then Acalabrutinib (the daughter of Inbrutinib. I still have some allergy but as long as I take an allergy pill daily it helps keep it at bay. Not sure that taking a daily allergy pill is great though either.
thank you!! He takes an allergy pill at night when it’s bad but also tries not to take “extra” stuff unless there are no other options. The hives sound terrible!! Hope you’re able to get some relief too!
I, too, had severe itching after my diagnosis and an exaggerated response to bug bites!! It. It continued after Venetoclax & Obinatuximab. My doctor gave me a prescription cream which helped a little. It lasted off and on, worse in the summer, for a few years. That was 4 years ago and much better now.
I have had CLL since 2008. I had FCR in 2015 and my spleen removed shortly after this to control CLL related haemolytic anaemia. I have been in remission since then and have never taken Ibrutinib or other novel treatments.
However I do have severe itching issues. I do not know the cause and nor does my GP. I've always wondered if it is due to some peripheral nerve changes post FCR. It is mainly in my lower legs and randomly starts in a small area such as the front of my shin or at the back or side of the calf. There is no visible rash. It is almost unbearable at times and you certainly cannot sleep with it. I get some benefit from E45 Itch Relief Cream but the effect is short lived. Steroid creams were only partially effective.
Eventually my GP prescribed me Elocon 0.1% Cream (Mometasone Furoate). It is a potent steroid cream which is only applied once per day. It takes about 24 hours to work but then the itch disappears completely. I normally only apply it for 3 days at a time and the itch is gone. It does come back occasionally and I repeat the treatment but it now occurs less and less frequently.
Perhaps your husband could try this if all else has failed.
I have high IgE and Imbruvica seems to help my itching. High IgE can be check with blood work. There are IV drugs for IgE but I am not sure how common high IgE is. I don’t take anything for high IgE except Zxyzal , Imbruvica and sometime steroid creams like Tricimilone cream.
On ibrutinib --- been to once-derma, as higher risk of 2ndary skin cancer & for the itching, worse late. at night. Prescription creams, antihistamine, etc have been. no help. Stopped ibrutinib for 2 months. as I'm UMRD -- to no avail. Makes sense it is the disease in many cases & BTK for some as well.
I have had skin issues ever since taking Ibrutinib. My hemotologist doesn't say it's related to the drug but I never had so many issues with my skin. Rashes, etc.
A 2020 literature search of over 2200 patients indicates about 10% reported rash, across all disease states ibrutinib is used. I imagine these are all studies and letters to the editor, case reports. Who knows what the incidence actually is, it may be a bit higher if docs "don't think it's related" and don't report it. The RESONATE study in CLL reported a 24% rash, other studies (including other diseases besides CLL) have reported varying rates. This is the most recent compilation of someone going back and looking at all the studies, and counting everything, I could find.
In the US, it used to be taught for docs, nurses, pharmacists etc to report side effects through what's now the FDA Adverse Event Reporting System (FAERS). Staff js extremely stressed/overworked in many states, I would think things are possibly underreported. Patients can report them. It's now online, so much easier than when I first started working.
I noticed the package insert for Imbruvica is now 70 pages, wow. Skimming through the CLL sections, it appears we have slightly higher than overall average incidence of skin problems.
my husband started Ibrutinib July 2020. In fall of 2022, started a full red raised itching rash. Saw several Doctors, tried several creams, nothing worked. Finally, a Dermatologist said I’ve got a plan.
Dupixent shots: start with two shots: then one shot every other week.
Mix Clobetasol Propionate: with one jar of heavy body cream. * Twice a day for two weeks. *Once a day for two weeks. *Every other day for two weeks. *Then only for flares.* ( It’s a strong Steroid, that’s why it’s mixed with *16oz jar of heavy body cream)
One Antihistamine pill once a day
Short warm baths with Oatmeal packets from Drugstore.
Keep lotion on full body.
Talk to your Doctor about this ?
This was the only thing that worked for my husband. He’s doing fine now.
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