Rash that does not it h

[littledab]

Hi been dealing with a rash all over my body,

Went to the dermatologist they gave me a cream for two weeks it got worse called them back they gave me another cream for another two weeks and it’s still not going away it seems like it’s spreading it does not itch it burns under the skin really bad. I have CLL has anyone out there experience this?? They said it was from my immune system. I called them again, i have appointment next week..

thank you for reading this post!

[NicoleLeukaemiaCare Administrator]

Hi there. Do you have access to a CNS at your hospital? They might be able to chat to you before your next appointment. Alternatively, we have a haematology nurse working in our office who might be able to offer some assistance - she is available 9am - 2pm Tuesday - Friday, Monday 9am - 5pm or Thursday and Friday evenings 7pm - 10pm. She can be reached on freephone 08088 010 444

[lankisterguy]

I have experienced Petechiae and occasionally mildly itchy skin and plaque psoriasis since 2006, but Idelalisib (which I took from 2012-15) aggravated it much the same as Rituxan monotherapy. Ibrutinib really make the rash painful and strongly itchy. I don't attribute it to any specific CLL treatment, but I believe it is an autoimmune reaction and caused by CLL messing with my immune system.

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Many of us with CLL get various auto immune problems, some benign and some serious from Rheumatoid Arthritis to ITP & AIHA, some have auto immune problems with kidneys that can be very dangerous. Wikipedia has a scary list of all the autoimmune diseases confirmed and suspects. see en.wikipedia.org/wiki/Autoi... en.wikipedia.org/wiki/Autoi...

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"Autoimmune diseases arise from an abnormal immune response of the body against substances and tissues normally present in the body (autoimmunity). This may be restricted to certain organs (e.g. in autoimmune thyroiditis) or involve a particular tissue in different places."

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My own itchy skin gets worse when I go through treatment (so Rituxan monotherapy and Idelalisib triggered a serious flare up). You could be experiencing the same reaction to Ibrutinib or Venetoclax controlling your CLL and indirectly causing the skin flare ups.

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I use CeraVe lotion when my itch is mild and Fluocinonide or the much stronger Triamcinolone acetonide when it is much worse. There are many different strengths and choices of Corticosteroids and Glucocorticoids en.wikipedia.org/wiki/Gluco... that your doctor can prescribe if the initial ones are not effective. See psoriasis.org/sublearn03_mi... psoriasis.org/sublearn03_mi...

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The most recent diagnosis by a research pathologist eliminated CTCL and its cousins, but attributed it to T-cell Dyscrasia.

ncbi.nlm.nih.gov/pubmed/176...

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The CLLSA archives has 500 replies 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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Len

[2003UK Champion]

Hi, sorry I cannot help but it must be horrible, perhaps it is a question best asked of your CLL medical team or GP, telling them what the Dermatologist has said and prescribed.

We are here to support you online but the Leukaemia Care support line is also free from UK landlines and mobile phones:

Email: [e-mail]

Freephone helpline: 08088 010 444

Opening times: Monday to Friday 8:30am - 5.30pm & Thursday and Friday evenings 7:00pm - 10:00pm

Please let us know how you get on and take care of yourself.