Venetoclax side effects: I've been on Venetoclax... - CLL Support

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Venetoclax side effects

kudoc profile image
5 Replies

I've been on Venetoclax for 2 months. Have been getting blister-like skin eruptions on my feet and lower legs that are painful to the touch and show swelling of the surrounding tissue. Biopsy and blood tests are negative for autoimmune reaction. Anybody else with the same experience?

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kudoc profile image
kudoc
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5 Replies

So sorry to hear that. I have heard good things about Venetoclax and hope that they can help you with the side effect. If not, other treatments are available. Best of luck to you in your treatment. Always distressing when something like this happens.

lankisterguy profile image
lankisterguyVolunteer

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

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Len

kudoc profile image
kudoc in reply to lankisterguy

Just started a 7 day Prednisone Pak. Seems to be working. Pain and sensitivity reduced for now. Final conclusion in a week. Thx

lankisterguy profile image
lankisterguyVolunteer in reply to kudoc

Oral / systemic steroids like Prednisone seem to work extremely well for the first few days, but there are side effects that may become troublesome over time.

webmd.com/drugs/2/drug-6007...

healthline.com/health/predn...

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That's why I prefer topical steroids- in prescription skin cream form like Fluocinonide or the much stronger Triamcinolone acetonide. And even those I try to limit the amount/area of my body that I apply it.

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The concern is that Prednisone or any steroid may suppress your immune system and make infections more likely.

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Once I have the skin flare up reduced I try to wean off steroids as fast as possible and switch to moisturizers, if they work.

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Len

ChrisLovesLife profile image
ChrisLovesLife

I've been on Venetoclax for 2 1/2 months, Rituxan for a month, just started getting raised rashes and my ear swelled then got crusty. Betamethasone cream is helping tremendously. Have been feeling great until the last few days, today feeling a little off, a little numb. Most likely will take a few days off the Venetoclax according to the doctor, having a Rituxan Hycela shot in the morning instead of a second Rituxan infusion. Lots of new options floating around out there, I've been a bit of a test rat over the last 3 years! The itching can be maddening, I sympathize!

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