Itchy skin on Ibrutinib

[Tapps]

Has anyone had good luck with terrible itchy skin outbreak: Does triamcinolone acetonide help?

[annmcgowan]

Hi I have been in Ibrutinib for 4.5 years now in the Flair trial. I have recently had itch skin on face, scalp and back. My haematologist doesn’t think it’s Ibrutinib related 4.5 years in. My GP has treat for eczema unsuccessfully and is now treating as fungal infection due to my reduced immunity. Have you just started Ibrutinib?

Ann

[Tapps in reply to annmcgowan]

Thank you for replying. Have been on Ibrutinib since July 2020. Have had smooth sailing till now. Rash on arms and back, terribly itchy. Went to Urgent care, got anti itch tablets It got worse , tried various creams. Called the Oncologist office, nurse said it couldn’t be Ibrutinib, seeing a Dermatologist today

[annmcgowan in reply to Tapps]

I hope the dermatologist helps you. Let us know.

Good luck

Ann

[Josephine233 in reply to Tapps]

I had several different types of rashes while I was on imbruvica. Allergist said was a side affect of imbruvica. I went to dermatologist several times as the rashes changes. Went off imbruvica still have problems with skin. Tried different types of creams, some seemed to reduce irritation but not all. Dermatologist gave me extra strength Zpack, which is a steriod. Did the best job. Doctor tried to say meds wasn't the problem, but never had skin issues before going on it.

[Panz]

I tried several over the counter things to no avail. Then was prescribed a 5% steroid cream and that was Triamcinolone Acetonide that helped a little but my dermatologist said I needed a 10% steroid cream and she prescribed Clobetasol Propionate….that works like a charm. We are all just so different. I have a very reduced immune system and receive IVIG every 4 weeks. Good luck finding what works for you! The itching can be intense sometimes. I am on Calquence soon to be starting my eleventh month and I am doing super great…this is my third line treatment and I have had CLL almost 34 years.

Panz 🙏💕🌈🙂☘️👍

[1susiE]

see previous entry re yeasty products

[Provence]

Hello Tapps, I had terrible itching skin rashes on my scalp and neck a few months after starting on Ibrutinib at a dosage of 420 mg per day. It was quite unbearable! The dermatologist I saw just did not take it serious enough, and then it was the Christmas period when everyone was on leave ( this is in France ). I ended up phoning the hospital in-patient unit for Blood disorders. in desperation. They recommended a strong anti-histamine in addition to the strong topical cortisone cream I had been prescribed by the dermatologist. By mistake I understood their transcription wrong and was taking double the dose prescribed, but it seems that that was not a bad thing for a matter of a few weeks. Once my haematologist was back from his Christmas break he lowered the dose of Ibrutinib twice - I have been on 120 mg since then and that has worked very well. I continued with the anti-histamine, now at the prescribed rate, for another six months and could then stop with it. The skin problem went away completely.

I am sorry that I cannot give you more exact information about the medication I took but I am. presently in the UK whilst I normally live in France , and all my medical files are in France.

I hope you will soon have some relief.

Kunderke

[Provence in reply to Provence]

Sorry, I meant a dose of 140 mg of Ibrutinib

[Graham64]

Hi. I am on Ibrutinib Flair trial. I had an all-over body rash when I started 4 years ago. It turned out I was allergic to the Co-trimoxazole that I was prescribed as well. It was changed to Azithromycin and I haven't had a problem since.

[Phyllis731]

I use Sarna. It's sold at most drug stores and is not expensive and it stops itching within 5 to 10 minutes. My doc told me about it. It's a cream in a pump container. Try it...It works.

[JLJC in reply to Phyllis731]

Can you look at your bottle and tell me if you use Sarna Original or Sarna Sensitive? They have different active ingredients. Thanks.

[Phyllis731 in reply to JLJC]

Sarna Original

[JLJC in reply to Phyllis731]

thank you 🌞

[200185]

I found that aveeno eczema skin balm works for me

[Doggoneit101]

Absolutely yes! Try Gold Bond Extra Strength Body Lotion Triple Action Relief for Extra Dry &Itchy Skin. It has been a miracle lotion for me!! It has a cooling effect and also has Aloe and vitamin E. It comes in a bright green bottle. I got mine at Walmart but I've seen it in pharmacies as well. I was advised to cut my fingernails so not to inadvertently give myself an infection. I used to scratch all night before I found this lotion. I feel for you it was horrible!

[lankisterguy Volunteer]

Hi Tapps,

-

There have been numerous discussions on itchy skin the last few days.

Here are some links:

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

And I disagree with the nurse that said it cannot be Ibrutinib- that is a known side effect listed for Ibrutinib- see my reply: healthunlocked.com/cllsuppo...

-

Can ibrutinib cause skin rash? google.com/url?sa=t&rct=j&q...

Cutaneous side effects of ibrutinib have been rarely reported and the most common presentation is skin rash [1].

-

Len

[SofiaDeo in reply to lankisterguy]

Len, your last link saying skin SE's are Rarely reported is a "letter to the Editor" whose reference citation was a study involving less than 100 patients from *2013*. The incidence of known skin problems was always over 10% and has been adjusted up with time, as more patient-years use of the drug occurred. It was only in very small, non statistically signifiant studies like the one used in that letter where the incidence noted was really low. A recent (2020) article pulled 25 patients with cutaneous reactions, to try to classify them. Eczematous types were included in this analysis.

pubmed.ncbi.nlm.nih.gov/327...

WebMD lists skin problems among the "common" side effects

webmd.com/drugs/2/drug-1654...

and a 2019 review noted that among various studies, the incidence was 2-27%. So early, non statistically significant studies didn't show a high incidence, but as time went on and larger numbers of patients were exposed to the drug, newer studies show this incidence has increased compared to when the drug was approved. Even then the incidence was not "rare" (see package insert last link), so IDK why docs ever started saying this.

sciencedirect.com/science/a...

Dr.'s Stepehns and Byrd suggest the small subset who get the "palpable, sometimes pruitic" (raised lesions, not flat on the skin like petechiae, that can be itchy) may be due to an off target effect on EGFR. It seems there is indeed a small subset of us who get these lesions that didn't show up in the early trials.

ashpublications.org/blood/a...

I don't know why clinicians are pooh-poohing us when we report it. As opposed to believing us, and making an Adverse Effect report (in the US anyway) so that SE profiles can be adjusted. The data is there in the studies, not just for CLL but also for MZL as well as WM. I suppose it's because the life-threatening SE's get all the attention.

accessdata.fda.gov/drugsatf...

[lankisterguy Volunteer in reply to SofiaDeo]

Hi SofiaDeo,

Thanks for digging deeper and getting credible citations- I felt/recalled that it was a >10% AE, but the first pass with Google did not turn up good / recent / reliable sources. I should have tried harder - so again thanks for citing better data.

-

As I responded to a different post- healthunlocked.com/cllsuppo...

I have had minor skin issues (like the photo with the link above) that started one year before my CLL diagnosis, and every treatment made it slightly worse. Ibrutinib made mine look like that ugly pic healthunlocked.com/cllsuppo...?

-

I think I was one of the early patients that convinced Dr. Furman in 2015 that Ibrutinib had a direct link to skin pustules. Prior to that he attributed my skin artifacts to HHV6a.

-

Len

[SofiaDeo in reply to lankisterguy]

I think if you already had skin problems, this drug might aggravate them.

And it's so annoying to me, that when doing searches, all the older stuff is what we find easily, and we have to dig for the newer stuff!

[StayConnected]

I’ve been on ibrutinib for 3 yrs and have had itchy rashes starting in spring and fading in fall. 2022 has been the worst. I was miserable. Triamcinolone Cream helped some. Z pack was extremely effective short term, but within a day afterwards the itching returned.

I suggested that maybe the chigger bites started the rash and my oncologist says ibrutinib can exacerbate itchiness. The chigger theory is a stretch, though, because the rash was so widespread. We’re waiting to see what happens next spring.

[Tapps]

Thank you for your suggestions. So far I’ve called the Oncologists office, no help there!

Wen to Urgent Care, got a prescription, didn’t help . Next, saw a Dermatologist, got another prescription for itching. Prescription for cream is coming on Monday, I think. Now using OTC cream. And the Prednisone tablets.

Sleeping at night is tough.

[spanish36]

When I have to stop taking Acalabrutinib, prior to and after a surgical procedure, I develop a maddening itch in the soles of my feet after two days abstinence .

My Haemotologist placed me on non drowsy Fexofenadine for alergy relief during these bouts of itching.

In my case the itching disappears shortly after taking one 180 mg Fexofenadine tablet .

Please check with your Doctor before taking this medication.

[Tapps]

Thank you. I’m calling the Oncologist office again; on this Monday. The nurse dismissed my concerns when I called earlier this week.

The ( Rash ) seems to be spreading.

[SofiaDeo in reply to Tapps]

Oh No! I am so sorryto hear your concerns are being dismissed by the nurse, since ibrutinib can indeed cause skin problems. I quit a hematologist over how mine were handled, with them denying the drug could *possibly* be a cause.

I had eczematous lesions as diagnosed by multiple biopsies, which then got infected with Candida yeast (normal skin flora overgrowing) and then a staph infection months later.

I quit the steroids (triamcinone cream then ointment) after the first week, my skin was like leather, very stiff and cracking and both the steroid ointment as well as cream stung and burned. I couldn't stand it, I used CeraVe Itch Relief with pramoxine until the burning pain got tamped down, then switched to basically pure natural oils or mild aloe vera gel based lotions. I used a variety of pure kukui nut (Hawaiians use it for flaky skin rashes), expeller pressed food grade coconut, and nilotika shea oils/butters. Sometimes a safflower oil, I keep food grade around for my dogs. I just alternated them instead of trying to make up some mixture, I was too ill to make a custom mix. They have various degrees of oiliness, depending on whether I was going to bed or had to get dressed to go to the doc or store, or just lying around, I kept my skin oiled/lotioned as much as I could. When I noticed it was dry, I used more, I didn't let it get all dry and flaky. As my skin healed, I needed to do this less.

[Tapps]

Thank you for sharing your information.

[lankisterguy Volunteer]

Hi Tapps

I think I mentioned it somewhere in this string, but the only thing that really reduced my skin issues and eliminated the itchiness was photo-therapy Lightbox treatments with narrow band UVB rays. psoriasis.org/phototherapy/

Your dermatologist may have some Psoriasis patients using it, and there is likely an outpatient clinic where the procedures are done using equipment like this: verywellhealth.com/photothe...

It's not trivial and may require treatments 3X per week for 6-8 weeks until you get to the maximum exposure with the best reduction of symptoms. In my case the itchiness got better with each exposure. After months of travel to a dermatologist clinic 3 miles from home, I moved 30 miles away and then got my own equipment for treatment at home.

-

Len

[Tapps]

where did you go for Light Therapy?

[lankisterguy Volunteer in reply to Tapps]

Hi Tapps,

Weill Cornell NY Presbyterian Hospital in NY City has 3 lightboxes that I used initially, then I found a dermatologist in Hoboken, NJ with one, that was 3 miles away and I could ride a bicycle to.

I just used Google Maps and searched on phototherapy - it gave me a few dermatologists that mention it in their websites. One is 5 miles from me in Union NJ

I would expect that nearly any dermatologist that treats Psoriasis can advise where there are outpatient lightboxes that can be scheduled.

Len

[Tapps]

Thank you for sharing your information, it’s appreciated.