Hello everyone I haven’t posted for ages just trying to deal with multiple problems, I want to ask if anyone has any skin problems that has been linked to CLL , as I have had a biopsy of the skin for ongoing rashes on the top of my back which is very tender to touch and I have been told it is CLL that is causing this problem, I am waiting to be called by the hospital to go and see my haematology dr
Just wanted to know if any one had this problem. Thank yoy
Hi Altindal22,
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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 950 postings that mention skin issues and CLL:
healthunlocked.com/cllsuppo...
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The NIH has several papers suggesting that CLL itself leads to skin issues, as noted here:
ncbi.nlm.nih.gov/pubmed/174...
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 hear that getting regular skin exams under NHS rules can be a challenge, but if possible I suggest you have your GP or a 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.
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To see some of the other postings about skin rash, look for the box on this page labeled:
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Len
Thank you for the information I have forgotten how informative this form is that was really helpful thanks again at least I have an idea when I see my dr next week
Hello, I've had plaque psoriasis since age 12, I'm now age 67. But, I've never had it to the degree that I now have since being diagnosed with CLL in 2014 and starting Imbruvica in 2017. I can't determine if it's the CLL or Imbruvica that's making it worse! I'm waitng for approval to start Tremfya . Actually posted and asked if anyone else is on a biologic such as Tremfya while on Imbruvica! Best of luck from to you...
An itchy patch on my back went away after I started limiting gluten.
Thank you so much
I have lots of skin issues.....I wake every morning wondering what will have broken out overnight. But they aren't overwhelming and if that's all I have to deal with, I'm good with that. I think the worst for me are the "weather cracks" on the tips of my fingers.....they are a real pain and take so long to clear up.
Crazy Poison Ivy rash
skin infections and CLL
Rash on hands (Erythematous rash to the hypothenar eminence)
Ibrutinib and a rash
