Rashes: Has anyone had more than one kind of... - CLL Support

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Rashes

Josephine233 profile image
7 Replies

Has anyone had more than one kind of rash. I finally got rid of one and a different one started. I have body swelling. I've only been back on imbruvica for about 2 weeks now. The rash isn't scaling like the last one, now more itchy. Tired of trying to get the doctors to understand. According to them, imbruvica isn't causing it.

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Josephine233 profile image
Josephine233
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SofiaDeo profile image
SofiaDeo

Well, they could be wrong. Please show your doc the current Imbruvica website, which states that rash was seen in clinical trials:

imbruvica.com/cll/side-effects

As of Aug 2021, this medical site pharmacist also reports that "skin effects" are noted as a side effect. Although overall reports appear to be "mild" there are always people who may experience a more severe effect. Especially if a doc doesn't believe us and doesn't report the side effect. I know I didn't report mine to MedWatch, and I should have.

medicalnewstoday.com/articl...

Drugs.com also lists some skin side effects for the drug:

drugs.com/sfx/imbruvica-sid...

I too had my onc pooh-pooh the idea that my skin problems were either being caused by, or aggravated by, ibrutinib. I was taking Bactrim DS at the time, which is a skin sun sensitizer, plus fluconazole, and was having some lip cracking, etc. that stopped when the fluconazole was stopped. But my skin problems didn't clear totally until I stopped the drug.

Please consider reporting to MedWatch:

accessdata.fda.gov/scripts/...

Josephine233 profile image
Josephine233 in reply to SofiaDeo

thank you

lankisterguy profile image
lankisterguyVolunteer

Hi Josephine223

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I had an itchy rash on Ibrutinib, but not with Acalabrutinib / Calquence

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There have been lots of others here that also had it, so I suggest you send SofiaDeo 's list of "Official Side Effects" to your doctor.

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I went to one of the postings from the "Related Posts" box on this page

healthunlocked.com/cllsuppo...

and found all these

Related Posts

*Ibrutinib and a rash healthunlocked.com/cllsuppo...

*Treatment of rash from Ibrutinib healthunlocked.com/cllsuppo...

*Rashes on Ibrutinib and Venclexta healthunlocked.com/cllsuppo...

*Extreme Rash With Ibrutinib healthunlocked.com/cllsuppo...

*Rashes with Ibrutinib use healthunlocked.com/cllsuppo...

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So stand firm with your doctor to switch you to another drug, possibly Calquence or Venetoclax.

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Len

Josephine233 profile image
Josephine233 in reply to lankisterguy

Thank you

CCgroup profile image
CCgroup

Hi Josephine. I have been on ibrutinib for over 2 years, and in the last 8 months have had almost continual rashes and itchy spots of various types. One goes away, another comes along shortly after. I cut ibrutinib from 420mg per day to 280 last week. Yesterday I went to an allergy doctor who specializes in immunity to various allergy sources, and was given prescriptions for three different pills to take each evening, and a tube of Alergel to ease the itching. It will likely take time to see if these measures do anything, but I'd be happy to let you know if it does help.

Dan

Josephine233 profile image
Josephine233 in reply to CCgroup

Thank you

AnneHill profile image
AnneHill

I had side effects from Ibrutinib very quickly when I began taking it nearly 3 years ago. I have a lower dose now and thought it was helping but Iv changed my mind.The weird thing is that if I stop taking it for a few days for a procedure, within 2 weeks the side effects come back worse than before. My skin is dry and itchy. I have patches of eczema on my legs and red marks that come and go.

My wrists and fingers swell and the joints are painfull. I get roving pain. Iv even had a painful elbow.

Side effects of Ibrutinib are listed if you read the info and haematologists say things arent connected but many are listed.

The problem is what to do about it. I decided to stay on Ibrutinib because it is working but it isnt easy. Drinking more is a suggestion. I am going to monitor how much I drink.

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