I have read from others that large red very itchy spots can be a side effect of ibrutinib, which I've been taking for 3 years now. I had a previous session with the itchy spots and it just went away, but this one is brutal - sleep is all but impossible. I read from a fellow member of this site that after trying many medicines he found that clobetasol propionato creme worked very well, so I bought some. It did work on the first round of rash, but within a couple of days it was back again with bigger, extremely itchy spots. This time the creme seems to have little effect.
I'd appreciate any suggests that may get rid of this problem.
Thanks
Dam
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The Clobetasol Propionate Cream USP, 0.05% contains the active compound clobetasol propionate, a synthetic corticosteroid. It is classified as in the super-high range of potency as compared with other topical corticosteroids. It worked at first but no longer.
I also found Fucidin 2%, an antibiotic for skin infections. Again, it worked at first then quit. More of these red spots about the size of a 25 cent coin are showing up on my legs, and one on my arm.
I'll try to get in to see my dermatologist today to see if she can figure it our.
Good luck with your appointment! In case you want to try a cheap something and not yet tried it try to smear coconut oil on the spots. It is known to have antibacterial and antifungal properties due to the lauric acid it contains. And if it does not help you can simply consume the rest because it is edible 🙂
Thanks LeoPa. That is definitely one I have not heard of. The suggestion is timely - in Costa Rica we have not shortage of coconuts. I'm off to the beach for a few days and see if I can get it there fresh.
I have not tried that , so will but some to try. Fortuately in Costa Rica no prescription is required for anything that isn't narcotic. I don't even need a prescription for my ibrutinib. That makes it a lot easier.
We have had many past discussions on skin issues, possible causes and palliative treatments.
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I will paste a past long answer below, but the short version is that CLL is often related to skin rashes, blisters, papules etc.
Treatments like Ibrutinib can make the skin problems worse or better for some of us.
The primary way that our CLL experts will try to sort out whether the issue is treatment or not, is to pause the Ibrutinib for 2-4 weeks, and if the problem subsides than consider an alternative like Acalabrutinib / Calquence or Zanubrutinib / Brukinsa.
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I have had minor skin rash issues on every treatment, Ibrutinib was the worst, Venetoclax and Idelalisib / Zydelig were moderate, Calquence is the best so far.
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+++++++++++++++++++++ the long answer++++++++++++++
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 expert pathologists 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 has over 438 postings that mention rash:
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).
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I obtained a home unit in December 2020, it's 2 meter/ 6 ft high with 8 special fluorescent bulbs see: daavlin.com/product-spotlig...
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The psoriasis & seborrheic keratosis was in full remission and I only needed 1 treatment per week - a total of 8.5 minutes exposure to keep it under complete control, while on Venetoclax.
When I switched to Calquence I was able to stop the photo therapy, the rash is back, but mild enough that I am avoiding treatment for now.
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Our archives has over 950 postings that mention skin issues and CLL:
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".
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I suggest you have a good cancer oriented dermatologist do a full body inspection of your skin every 6 months (we get skin cancer at 5x to 8x more often than non-CLL people- and the only way to detect it early is get an expert examination) and helping treat your sores will be part of that care.
First I would like to thank you for your many well informed posts on a number of topics related to CLL over tiem. You time, effort and knowledge are very much appreciated.
Although you seem to have great success with calquence, I've read a number of posts where different members have had considerable side effects. What do you think of Zanubrutinib? I am hoping for the authorization for a change from the government medical system who currently pay my bills . This seemed the favourite of the reviews on current tests. I'm reluctant to stop the ibrutinib for a long period, as my oncologist felt I was at minimum from when I reduced my dosage from 3 to 2 pills per day. That did remove the side effects for almost a year.
It seems you have been through the whole gamut of side effect - I would imagine there were some very uncomfortable times. It seems my search for the miracle cure is in vain, so will pursue the change option. In the meantime I'm getting some sleep by putting my sheets and blanket across the bed covering my chest and stomach, as the itches are in an arm and both legs. Then I crank the air conditioning up to very cold and leave my legs uncovered Once cold enough, they stop itching. My daily 600 meter swim in a cool pool also gives me relief for the next hour or two afterward.
The photo therapy sounds interesting. I looked up the site, as I'd not heard of it for our problem. Should nothing else seem to work I will try that.
My dermatologist gives me a thorough going over every six months, Her suggestions have not been successful to date, though.
I'm off for a few days at the beach, so will stay in the sea for at least an hour three times a day and see how that works out.
Your report on the research you have done on his itchy topic is very much appreciated, and has certainly given me some new ideas and reinforced ideas I already had. Many thanks.
I found this post and pulled it up because I also get these red spots, often with a light center, that itch very much,. Have had a couple on arms, one on back of neck, and something similar right now on face. I generally do not have more than one at a time -- but I am in W&W so mine obviously are not caused by the medicine you are taking. Instead, I'm assuming, they may be caused the CLL itself. In fact, my dermatologist recently gave me a steroid cream for this one long-term spot and if it isn't gone by next appt, he's going to do a biopsy. Just thought I'd add this to your considerations.
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