Skin rash: I have been on Calquence for about... - CLL Support

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Skin rash

Zsuzsika profile image
18 Replies

I have been on Calquence for about two months. Came down with a rash on my body. It itches a lot. My oncologist stopped the medication and put me on Benadryl . Has anyone experienced this and how long before the rash disappeared?

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Zsuzsika profile image
Zsuzsika
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18 Replies
lankisterguy profile image
lankisterguyVolunteer

Hi Zsuzsika,

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We have had 3 postings today about skin rash, one on Ibrutinib, one on watch & wait;

Here are links to those healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

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Please read all the replies and see the suggestions about reading past postings from the box on this and all of those pages labeled "Related Posts"

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My replies to those other postings are here: healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

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Len

200185 profile image
200185

I had rash itching and parched skin on calquence. Finally tried aveeno anti itch balm for eczema. It solved my problem. Hopefully it will help.

Zsuzsika profile image
Zsuzsika in reply to200185

Thanks for the suggestion

Provence profile image
Provence

Hello Zsuzsika, I have had terrible rashes after I started taking Ibrutinib which is not that different from Calquence I believe. What helped me was antihistamines and a lowering of the dose of Ibrutinib that I took. I went from 420 mg per day, to 280 mg per day and then very quickly after that to 140 mg a day. The dermatologist also gave me topical skin creams and mousses to help with the itching. I stayed on the anti-histamines for 8 months and then could come off them. I have been okay since then.I hope you find relief soon,

Kunderke

Tapps profile image
Tapps in reply toProvence

How are doing now? Is the Rash still gone?

Provence profile image
Provence in reply toTapps

Yes all is fine. I do not itch anywhere! Is there a reason you ask now?

Tapps profile image
Tapps in reply toProvence

yes, Terrible full body red rash. On Ibrutinib, Doctor took me off Tuesday 12/06/22

Tried many RX creams and medication. Also recommended OTC. Looking for answers.

Thank you.

Provence profile image
Provence in reply toTapps

Oh that sounds really awful. I feel for you. I hope it settles now that you are off the Ibrutinib. What does OTC mean? Are you also adjusting your diet in this phase ?

Tapps profile image
Tapps in reply toProvence

Over the counter. OTC

Just off the shelf in the drug store.

Provence profile image
Provence in reply toTapps

Thanks for explaining! And I wish you all the best. Hopefully a period of allowing it all to calm down by not taking the medication and putting as little additional stress as possible on your body ( eg. what you eat, how much you sleep , daily walks in nature etc. ) should bring the rash down.

LeoPa profile image
LeoPa

I can't help with the rash but I love your name. The Hungarian version of Susie ❤️

JLJC profile image
JLJC

Hi. I am currently experiencing same problem. Dr took me off Calquence for 3 days and I took a steroid dose pack for 6 days. 3 days after back on Calquence rash started to flair up again. Did your Dr take you off for a certain periodOf time with a plan to resume? We are going to reduce my dose to 1x a day to see if it helps before going back to full dose 2 x a day. So tricky to know what to do since skin rashes are hard to determine actual cause especially on CLL. Thank you.

Zsuzsika profile image
Zsuzsika in reply toJLJC

Due to the rash and anemia I was taken off of Calquence and when I go back we will try once a day

JLJC profile image
JLJC in reply toZsuzsika

I have been on reduced dose of one tablet a day and today I start back on a new regimen of 2x a day, then 1x a day, then 2x a day etc. hoping this will introduce the full strength of Calquence slowly. Crossing my fingers that if I get a rash it will be slight in comparison to the full body breakout I had gotten about the 5th week of taking Calquence 2x a day. 🤞🏻🤞🏻🤞🏻💪🏼💪🏼💪🏼

Zsuzsika profile image
Zsuzsika in reply toJLJC

Good luck and keep me posted.

Tapps profile image
Tapps in reply toJLJC

please let us know how you are doing?

JLJC profile image
JLJC in reply toTapps

I am doing well. Have not had the full body rash since the incident I posted 9 months ago. 🤞🏻🤞🏻

gfreiman profile image
gfreiman

I have been on calquence for around 3-1/2 months. When I started I was getting anemic and the anemia got quite severe leading to 9 blood transfusions. Since then, the anemia has faded and I feel much better. Soon after starting calquence, I noticed a rash all over my torso. I should have mentioned it right away, but the rash was insignificant as compared to my hemoglobin which was running in the 6's and 7's with a occasional appearance into the 8's after a transfusion. At about the time that my anemia was fading, I started getting mouth sores with some of the white tell tale signs of thrush. I was treated with Nystatin, floconazole and voriconazole which had not effect. After around 10 weeks with this condition , I saw a dermatologist who dismissed the thrush diagnosis and diagnosed me with Herpes Simplex Virus which he believes is a reaction to the calquence. He took a biopsy and a swab to run some test to confirm this and we are still waiting for the results. The mouth sores have made eating extremely difficult and panful, I have lost around 30 pounds in 10 weeks and have been off Calquence for around 3 weeks. The dermatologist put me on predisone tablets and cleobetasol ointment.

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