facial rash after starting Venetoclax 50mg

[MalcT]

After I increased the Venetoclax to 50mg I developed a nasty itching spotty face...

mainly on forehead and down to nose ...

This increased further as I started the 100mg.

Is there anyone else who has the same side effects?

And is there anything to treat this....

Any suggestions would be appreciated ...

[Skyshark]

A rash is not listed as a side effect of Venetoclax. Are you taking a combination therapy or is Venetoclax a monotherapy?

Allopurinol, Aciclovir and Co-Trimoxazole are commonly prescribed with Venetoclax, the patient information leaflets all list a rash as a possible side effect.

Contact your CNS or Macmillan Nurse, send a photo. You should have been given a card with your CNS's/MacN contact details.

You should have had a consultation to prescribe the increase to 100mg. If that was face to face I'm surprised they didn't notice. Might go unnoticed on a video consultation.

Ensure your water intake is adequate. The Venetoclax information says 1.5L to 2L a day, with the web site saying only for 2 days before ramp up and day of ramp up. But other supporting meds need more, Allopurinol 2L to 3L a day while taking it.

I had a very itchy rash on forearms, back of knees, midriff and top of legs. Drowned it with adequate water intake, noticeably better in 24 hours and gone in 48 hours. I think this was due to Allopurinol but a rash on the face would probably implicate one of the other meds.

[MalcT in reply to Skyshark]

I have been taking Allopurinol, Aciclovir and Co-Trimoxazole since beginning of June.....no

rash from them. It started after few days with the 50mg Venetoclax. I showed this the Nurse when I collected the 100mg. She only advised to take pictures. The only contact details I received are two answer machines. They call back as soon as they listen to it.....hopefully.

I drink 2-3 liter a day.....since the start of my treatment.

Thank you for your reply

[SofiaDeo in reply to MalcT]

If you have been outside in the sun recently, you might be having a sun related phototoxicity. You would have to cover up in addition to using a sunscreen, so a large brimmed hat. There are non sedating antihistamines like cetirizine (IDK UK name) that can help, you can usually take them along with Benadryl.

[MalcT in reply to SofiaDeo]

Thank you SofiaDeo

I am not in the sun at all and I wear a wide brimmed hat when I am out

.....the whole year.

I noticed that the spots came up when I used sun cream 50 SPF and after the

Specialist Nurse recommended Aveeno, this made it worse.

I will see, if after stopping using those creams if it get's any better.

[SofiaDeo in reply to MalcT]

That might work. My skin does not like chemicals, I tend to use plain oils instead of proprietary stuff. For suncreen I use titanium dioxide or zinc oxide, non micronized.

This one in the UK has mild exfoliating action for your face to not clog pores, but if your skin is really sensitive you probably don't want the exfoliation:

amazon.co.uk/Biolove-Sunscr...

This one doesn't have any exfoliation, is hypoallergenic/fragrance free:

amazon.co.uk/Babo-Botanical...

Here's one that travels well, the lid won't easily pop off:

amazon.co.uk/100ml-Shade-Al...

Your local chemist probably has items similar to these. Just try to avoid the chemicals, I personally find my CLL skin does not tolerate them, perhaps it is the same with you. Especially when you have to take the Bactrim DS; I was having skin problems one induction when I was taking a different CLL med but also needed Bactrim DS, valacyclovir, plus fluconazole. 2 of those three were potentially photosensitizing, and I would get a rash within 15 min of sun exposure.

Note also that diphenhydramine/Benadryl can cause sun-skin problems.

webmd.com/skin-problems-and...

If you lock your post you may get more replies.

[Skyshark in reply to MalcT]

Phone them and ask if they have e-mail you can send the photos to. I've been to two hospitals, the first the card hadn't got an e-mail, they gave it me during a video call, I wrote it on the card. The second has got e-mail on the card. It probably depends on staff changes that require a new card and they haven't got new cards just for e-mail.

[MalcT in reply to Skyshark]

I did sent them pictures to their email address but it looks like they're not concerned.

[Pacificview]

IHi MalcI am on O & V, one month away from finishing infusions. So mostly I notice Venetoclax side effects at this point. Since I have had month long gaps between Obin infusions.

One of my current side effects is an alergic reaction that will start to creep up. I can literally feel it creeping up. I start to notice a slight itch in one area. Then it slowly starts to effect other areas. Facial is one of the areas it creeps to. As this process is progressing. A light goes off in my brain and alerts me. Hey, your having an alergic reaction, take some benedryl quick to stop this!!!!

I bought a large bottle of generic diphenhydromene..think that is how you spell it... A lot cheaper than High Stregth Benedryl tablets!

Usually 50mg will stop the reaction dead in its tracks. Sometimes it will take another dose a few hour later. But the goal is to stop the reaction prior to breaking out in the rash or hives or both.

If the benedryl did not stop the allergic reaction. I was ready to go to the ER pronto.

I carry with me a side effect crash cart so to speak. With everything I need to tamp down side effects. One that I think is most important is the diphenhydromene. To stop the alergic reaction before it gets too far.

Thats my experience, hope it helps.

John

[MalcT in reply to Pacificview]

thank you John....this is very helpful....I already started with Benedryl.

I will look into the generic diphenhydromene you recommended.

Thank you