Venetoclax Side Effects

[JessicAb94]

My Dad is on V ( 400mg). When he started his first 400 dose he got rash ( red to pink ) on his skin. It’s spreading.

Please share what you now.

[Michaeljohn50]

I had minor rashes off and on while taking V but the more annoying side effect was itching . At worst the itching seemed to takeover most of my skin surface area, briefly. The rash and the itching were sometimes one and the same phenomena. I stopped taking V in March and just recently became itch free, fingers crossed. The prize is the opportunity to achieve uMRD so, unless the rash is unbearable and you need to consult a doctor,it's probably worth taking appropriate medication and persisting..

Best wishes

Michael

[RosettaClapp in reply to Michaeljohn50]

very interesting to hear your skin was itchy on Venetoclax...mine is too but haematology nurse told me it isn't aside effect of the drug ! what did you try to keep it under ??

[Michaeljohn50 in reply to RosettaClapp]

Benadryl and, as recommended by others, Cerave moisturiser. I tried 2-3 antihistamines before settling on Benadryl Acrivastine as the one that worked best for me. It took the edge of the itching, not sure there is a cure!

[DoreMan in reply to RosettaClapp]

I got the same response from my clinical trial team !! Not a side effect. The back of my scalp is constantly itching along with various spots that pop up from time to time. I too find Benadryl offers the best relief. Just took one a minute ago 😆 I am glad to know I'm not crazy ! Well...crazier ?

[lankisterguy Volunteer]

Hi JessicAb94,-

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 made the rash painful and strongly itchy, Venetoclax was less of a problem but still aggravated my skin. 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. Your dad could be experiencing the same reaction to Venetoclax controlling his CLL and indirectly causing the skin flare ups.

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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. 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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My most successful treatment is 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) which I am using to control my rash during Venetoclax treatment I have been on since 2016.

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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, 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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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 dermatologist can prescribe if the initial ones are not effective. See psoriasis.org/sublearn03_mi... psoriasis.org/sublearn03_mi...

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Len