Imbruvica issue?

[Huckfin1]

I have been taking Imbruvica for 7 months. I do not have a rash but I get sores that start off looking like fire ant bites. Anyone else have this? I am still trying to figure out if this is due to Imbruvica or something else. I just stopped taking the Imbruvica to see if the sores go away. Thanks in advance.

[Cllcanada Top Poster CURE Hero]

I recommend you discuss this with your CLL doctor... you should not stop Imbruvica (ibrutinib) without a consultation.

How long have these rashes been happening? Not shingles??

~chris

[Oleboyredw-uk in reply to Cllcanada]

I agree with Chris, first port of call should be the team managing your CLL treatment.

rob

[cllady01 Former Volunteer]

Has your hemo/onco been consulted? Like Chris has said--there are consequences when the meds are stopped---you need consultation.

[starsafta]

I concur. Do not stop Imbruvica for this. Sores that are often described as "bug bites" are pretty common. Are yours itchy?

A couple of remedies that might help:

Calendula Cream or Ointment, made by Boiron, is a homeopathic salve made from calendula flowers. It is my go-to treatment for itchy bites, poison ivy, and rashes. Immediately helps itching, and speeds up healing. When bristly cucumber stems gave me a 2" diameter rash on my arm last summer, it disappeared in 30 minutes with Calendula Cream.

If you are experiencing intense itching, I learned an amazing trick from a fellow CLL'er. Aim a hair dryer at the spot, being careful not to touch the skin, for about 15-20 seconds. I find that only the bite feels like its burning, not the skin around it. The burning actually feels good. The itching goes away for many hours, and the "bites" seem to heal more quickly. May take a few days of such "treatment."

I sometimes take a photo of an area of concern and send it to my doctor to see if he feels I should come in. Saves trips.

[Que-sera-sera]

Hi, you dont say the location of the sores but your post caught my attention because they sound exactly like the ones I have under my tongue! (Of all places!!). Still trying to figure out myself if due to imbruvica or something else??? And yes, they started looking just as you described and then got swollen, opened up and looked really "gnarly", then to my surprise they healed almost completely for 3 weeks but now they're baaaaack! This time I'm using Tea Tree oil (diluted) and it seems to be helping a little! If anybody else knows something pls advise. Thank you.

[starsafta in reply to Que-sera-sera]

Imbruvica is known to create sores in the mouth on gums and inner cheeks. I stopped getting them when I started putting two drops of Natural Factors Organic Oil of Oregano on the toothpaste on my toothbrush. Oil of Oregano has anti-microbial properties. The sores I had when I first started cleared up quickly, and no more have developed. It does "dance" on the tongue. Before spitting it out, I swish it around and use it as mouthwash. I think it's also making my teeth whiter. Personally, I prefer Oregano to Tea Tree oil, since it is a food and pretty harmless. In this brand, it is mixed only with organic olive oil. Hope this helps

[Que-sera-sera in reply to starsafta]

I was debating betwen tea tree n oregano because they sounded similar; they even had a recipe for a toothpaste with tea tree/coconut oil and baking soda. So, I ended up getting tea tree, but definitely planning to get oregano as well, because you're right, I begun imbruvica in Oct and the sores started right away; had a whole batch of them and got rid of most, but the ones under tongue have been most stubborn, but with Tea tree I feel like I'm rinsing my mouth with Pine Sol....lol! Plus the oregano we can ingest (in small-diluted amts) to maybe obtain additional benefits....Thank you !

[msuteg]

When I had shingles I thought they were fire ant bites. You might have it checked.

[Huckfin1]

Thanks for all the replies. I stopped the Imbruvica under doctors orders. Dermatologist did biopsies and cultures but nothing definitive just lots of neutraphils. My sores are on hands and thighs.