Has anyone had a rash with calquence?

[Mackiec1108]

Calquence Rash

[SOLLYTHEGOLLY]

Yep. Had some petechia on legs and arms. Started to fade after about 6 weeks. By three months the rash had all gone.

[lankisterguy Volunteer]

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. 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 (Rituxan monotherapy and Idelalisib made it moderately worse but Ibrutinib triggered a serious flare up). You could be experiencing the same reaction to Calquence 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...

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Len

[Galah91 in reply to lankisterguy]

Hi lankisterguy, many thanks for your reference on the 'itchy scalp' we endure. You could facilitate a class on this at med school. 👍 I used to prefer a number two hair trim to combat the waste of gels that stick to my hair then Lockdown came, I've let it grow since then, plus my stylist closed her salon.

[c8385m]

Hi. My wife is in year 10 of various trials and treatments for cll. Started Calquence 16 days ago after disastrous side effects from imbruvica. By day 3 on Calquence her legs from knees to toes turned bright red. Feet were also swollen. It was not extremely itchy. Doctors were puzzled but said looked like a rash. By today it’s almost gone. Still see it on feet and feet are swollen. Only treatment was prednisone for 4 days. Now biggest problem is severe bone pain that usually presents itself at night. Neck, back and shoulders. Any thoughts on dealing with this? Prevents her from sleeping. Thanks.

[Galah91 in reply to c8385m]

Hello c8385m, sadly we all react differently to these substances. I use heat packs and hot water bottles, place them wrapped on the area. Gentle massage and hydro therapy. Regular sessions in the steam sauna. I also endure the swollen feet it does partially subside but not completely in my case. I was on one 40mg Furosemide tab daily which did not agree with the heart meds, this was replaced with Losartan = Hydrochlorothiazide one daily.

I also practice meditations by Dr Joe Dispenza since our first lockdown, an Intune soul sent me a link after reporting to her that my neighbours don't react to my regular screams provoked by extreme pain. Furthermore, I now have a medical alarm.

[Savvyman]

Yes, I developed an all body rash about 2 weeks into acalabrutinib treatment. It went away after about a week but returned about 4 weeks into treatment. Doesn't seem as bad the second time around.