Venetoclax and Eczema: I have been on Venetoclax... - CLL Support

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Venetoclax and Eczema

GerryPL profile image
13 Replies

I have been on Venetoclax for 8 months and over the last 6 weeks developed Eczema over multiple part of my body. Never had it before, my son is a Consultant Dermatologist and confirmed it was Eczema. This is my final cycle of Venetoclax and hope it will clear up when I stop. Only ever use pure soap to wash with (no perfume etc) and have not changed my behaviour in any way that might have caused it.

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GerryPL profile image
GerryPL
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13 Replies
cllady01 profile image
cllady01Former Volunteer

Gerry, has your son suggested the type of Eczema you are experiencing?

The following linked site is a good run down of the possibilities of types of Eczema---each from a different trigger/cause.

I hope you find your cause and can get some relief soon.

GerryPL profile image
GerryPL in reply tocllady01

Thanks for the advice, that is very helpful. I am just wondering if exzema should be flagged up as a side effect of long-term use of venetoclax. When I speak to my haematologist again I'll ask him to consider that.

Photo300 profile image
Photo300

Hi Gerry, I am in the same position as you. I have been taking Venetoclax for about 10 months and in the last few started with eczema across multiple parts of my body, the legs being worst. My haematology doctor arranged a dermatology consultation at my local hospital and after the visit it was confirmed as discoid eczema. I have been prescribed 'Globoderm' (500micrograms/g) ointment to use on the affected areas and 'Hydromol' ointment for general use and I must admit that the combination works wonders. As soon as a patch appears I apply the ointment and within a couple of days it starts to subside.

GerryPL profile image
GerryPL in reply toPhoto300

Thanks that is very helpful. I went back to my son this evening sending some close up photos he said to use Elocon which I think is a similar potent steroid cream to Globoderm. Always a bit cautious about any prolonged use of these steroids.

hankisbest profile image
hankisbest

My skin suffered during treatment with Gazyva/Venclexta. Super dry, itchy, bumps and such. I am followed by a surgeon after one squamous cell carcinoma came put on my leg. For the dryness I would say stay away from perfumes and dyes in any skin products, soaps and creams, and your laundry soap. I got some relief finally by making a batch of body butter (easy to make!) and applying heavily for about a month. No essential oils or scent of any kind added no matter how tempting!

susq9948 profile image
susq9948 in reply tohankisbest

How did you make your body butter?

SofiaDeo profile image
SofiaDeo in reply tosusq9948

I use nilotica shea butter, coconut oil, and for especially heavy flare ups kukui nut oil. I also keep nilotica shea oil around, it's in a pump bottle so easy to use. A commercial brand that currently doesn't irritate my skin is Sundial Brands' Shea Moisture line, they have a variety of skin and hair products. Those have natural scents, so if scents are bothering you, maybe skip them. But instead of perfumes, I can use their Coconut and Hibiscus Body Lotion for one scent, and their Baby Lotion has frankincense and myrrh for a different scent. But I am watching that brand closely, Unilever bought them out in 2017 and I hope they won't switch to cheaper stuff in the products. I know when Proctor & Gamble bought out Vidal Sassoon, the products were discontinued, then brought back but with different formulations, which I reacted to.

GerryPL profile image
GerryPL in reply toSofiaDeo

Thanks so much for your really helpful reply. I've have ordered some nilotica shea butter.

hankisbest profile image
hankisbest in reply tosusq9948

Put 1/2 cup each of Shea butter, coconut oil, and sweet almond oil into a double boiler and heat over medium heat stirring constantly until melted. Cool slightly. Place bowl in refrigerator for one hour or until edges are hardening. Beat/whip with hand mixer until fluffy. You can also add cocoa butter.

SofiaDeo profile image
SofiaDeo in reply tohankisbest

This sounds better than the shea/coconut mix I use! I am going to try this one out too, thanks!

GerryPL profile image
GerryPL

Thanks so much for your helpful reply, its a great help to know others have similar problems.

Jujy profile image
Jujy

Curious if your eczema got better when you completed your venetoclax treatment ended. Husband got eczema about 7 or 8 cycles in.

GerryPL profile image
GerryPL

My eczema has certainly improved and I try to carefully manage it. Didn't find steroid creams were anything but a short-term solution and now use Dermol emolument even when I have no eczema - avoid soap altogether. As regards CLL and eczema I think there is probably a link but can't find any reliable research to support that.

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