I have been on Ibrutinub for over 4 years and my CLL treatment results have been positive for the greater part. Approximately 3 months ago, I have started to have red lesions come out over most of my body. They have come in two different forms ranging from smaller 'mosquito bite size' like lesions to bigger and thicker lesions ( 2.5 to 5 cm range). The bigger lesions first appear like shingles over a period of 2 to 3 weeks and eventually produce scabs that don't go away.
I have had many a biopsy done and different specialists have concluded that the lesions are non bacterial, non viral or non-infectious in nature. I am being told that they are not a side effect to the Ibrutinib so I am reaching out to see if anyone else has experienced a similar condition and if they have found a viable treatment for it.
Any help would be greatly appreciated. Many thanks!
Written by
RichRoche
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When I had unbearable knee & muscle pains while I was on ibrutinib after 2 years; Dr suggested that I stopped taking it to see if symptoms disappeared.
I had a drug free and pain free period of about 8 months. Once my hemoglobin started to drop, I was prescribed Acalabritinib.
Yes, that is one of the side affect of ibrutinib, one of it's lesser ones; it is vicious a drug. When I started on the drug I also had lesions, mainly on my back. I was given something to ease the itch. Then it progressed to my pelvis, rearranged it. It is true that I was given double the dose I should have received. I am surprised that it is still in use.
I get these lesions. I had them before treatment and continue to. Although I took Ibrutinib as part of a time limited IVO trial, I stopped taking it in early August 2021 following the trial protocol. They don’t bother me so I have never sought treatment. ( I do do regular full body scans by a dermatologist).
I have been on ibrutinib for 4 years. As in your case, it worked wonders - it definitely saved my life. I cut my daily dose from 3 140 mg capsules per day to 2 each day. There was no change in the blood work or other tests and there were less side effects, however my oncologist says I am not to stop the pills under any circumstances as my dosage is minimum. I had a prostate operation recently and continued taking the pills throughout with no ill effects.
I have exactly what you describe, and have had it for almost 2 months, The itches made it almost impossible to sleep. I have them mostly on arms and legs. When I went to my dermatologist for a skin cancer checkup they had disappeared!! They are now back full force again and I have another dermatologist appointment on Wednesday.
I have found that most anti itch cremes don't help. Cutaclin was recommended on this site and it does help reduce the itch for a couple or three hours, so I carry a tube with me. Fortunately, I live in Costa Rica so can wear short pants, avoiding the heat and friction of heavier clothes and allowing me to apply Cutaclin as needed.
Another temporary relief that an infectologist recommended was boracic acid and medical alcohol mixed up and applied with a cotton pad. Again, the relief is temporary but it helps.
To get some sleep for the last couple of weeks I have folded the bedding in half so my chest and abdomen keep warm, but my legs are bare. Then I turn the air conditioning down to keep the legs and arms cold. Ice packs helped but only for a short while, as they melt. The bare cold legs one gets me though the night.
Good luck. If you find anything more permanent in the way of a cure, please let me know. I'm watching the results of Zanubrutinib as a possible alternative., as I'm certain it is a side effect of the ibrutinib.
Hey Dan, I really appreciate you sharing about your situation. I started on 3 pills a day but have been on 1 pill (140mg) for the last 3 years. I can't wait for the lesions to go away as I have some bigger ones on my face. Definitely a game changer. I am working with a dermatologist and will get back to you if I find a solution.
Just a note to tell you I missed my dermatologist appointment yesterday, however it wouldn't have helped as the itches have left. This is the second time they have come in force and then gone away on their own.
I have relayed my skin issues several times, so here it is again:
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".
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.
Hello Rich, I was started on ibrutinib 240 about 2 years ago when my spleen enlarged and my white cells spiked. Within 2 weeks I had a rash all over my trunk and legs as well as painful ulcers in my mouth. On the other hand I was extremely sensitive to the drug benefits as my white cell count started to go down in just that short time. I was taken off it immediately and after the symptoms subsided started taking the 120 dose. That dose was just as effective and after about 9 months my labs were practically normal and I asked to be taken off because I was still having intermittant subcutaneous skin bleeds and occasional mouth ulcers . It is now 14 months without the drug and I am still near normal but the numbers are starting to increase. If and when I need to start the drug again I will request a trial of the lowest dose, 70mg. I am a 130 pound woman and I think doctors perhaps don't pay enough attention to body size when prescribing ibrutinib. I noticed the prescribing instructions online now mention body size whereas I don't recall reading anything about that 2 years ago. Another thing I want to mention is that neither my doctor nor I noticed that I had signs of vascular bleeding in my lower legs. It was my massage therapist who brought it to my attention. She said she usually sees that in diabetics. She recommended compression hose. I started wearing compression socks and the redness has gradually subsided.
My husband who has Cll/Sll but never been on treatment, started having such lesions two years ago. They seem to appear suddenly, some the size of a swollen mosquito bite, others larger, or smaller and they itch ! Eventually they form scabs which take weeks, or months to clear up.
His physician prescribed a 1% Cortisone cream which didn't help. Then we tried a treatment which I had been using for an entirely different skin condition which happened to work amazingly well. It is Diprosalic Lotion (a combination of a steroid and salicylic acid).
When spots first appear and this is applied they don't progress further and never reach the scabby stage. It takes the discomfort out of this condition.
Now he is using the equivalent in cream form - prescribed by his doctor and compounded in the local pharmacy (3% Salicylic Acid in Betaderm).
(Since his diagnosis he has also had two surgeries to remove Basal Cell Carcinoma, had allergic skin reactions to two antibiotics, as well as exaggerated lesions from insect bites.)
as an orthopedic surgeon I am aware that this type of rash can be part of a rheumatologic disease called snkylosing spondylitis. There can also be vision changes but the most typical symptom is back and joint pain.
Other than that I’m not sure.
Have you seen a rheumatologist to check a blood test called HLA B-27, sed rate, ANA or Rheumatoid Factor etc?
Thank you skipro! I will follow up on your lead and see if this is a treatment option for me. First I have heard of this so I will definitely check it out!
Its a home remedy type treatment, but simple and effective. Oatmeal baths can be very soothing to itchy skin. A sock or stocking with uncooked rolled oats in the bath water makes a thisk sort of lotion. You can even gently apply the stocking when it is wet to the itchy skin and get more of the oatmeal juice directly on the needed areas. It has a short effect, but it is natural and works well.
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