Rosacea during IV treatment: I’m wondering if... - CLL Support

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Rosacea during IV treatment

Psalm22-3 profile image

I’m wondering if anyone else has had rosacea crop up well into treatment. I’m glancingly familiar with cutaneous B cell malignancies around the face so mimicking rosacea as to delay diagnosis of CLL or another Bcell malignancy, but I haven’t been able to find out whether the cutanaeous rosacea-like rashes have ever been known to appear during active and otherwise successful treatment for CLL. Anyone out there heard of such a thing? My hope/assumption is that the rash is a “normal” rosacea, and not a cutaneous accumulation of bad boy B cells.

12 Replies

Hello. My husband is currently being treated for it but we don’t think he has it. The medicine he is taking is not working. He keeps having breakouts and it doesn’t look like rosacea He has had 7 biopsy’s and one came back staph infection. What else could it be?

Psalm22-3 profile image
Psalm22-3 in reply to blur81

Mine definitely mimics rosacea perfectly, but I don't have any biopsies (yet).

Is your husband a CLL patient?

blur81 profile image
blur81 in reply to Psalm22-3

Yes he is. He finished his second round of treatments January 2019

He started breaking out with a rash all over his body during his first treatment of ibrutinib in 2017 The steroids helped but it kept coming back. He has been treated for scabies, didn’t work. He is being treated for staph not working and has been treated for shingles didn’t work. I will have his dermatologist prescribe some of the medicine others have listed. Good luck to you. Thank you.

JigFettler profile image
JigFettlerVolunteer

Hi!

patient.info/skin-condition...

- a UK link which may be of assistance.

I would appear from what you say that you are assuming it is Rosacea.

Would it be a good thing to be certain?

Your family Dr may be prepared to use a trial of treatment .

Our immune systems are disturbed by CLL and the treatments we get, so it may stand to reason our skin be affected. Nevertheless prudent to ensure its not the "bad boy B's"

Wishing you well.

Jig

Psalm22-3 profile image
Psalm22-3 in reply to JigFettler

I love this community--so responsive and earnest! Thanks for getting back to me, JigFettler, and for going to the trouble to find and post the article.

I had rosacea-like rash about three to four years prior to diagnosis of CLL. My WBC was normal at the time. There is a loose association between rosacea and Demodex mite. Is your rosacea nodular?

In my case, I believe the CLL cells were sneaking around causing immune dysregulation and mimicking rosacea somehow. Who knows the exact mechanism of action? But the rosacea cleared up with prednisone.

It is not “leukemia cutis” if that’s what you mean by cutaneous “bad boy cells”.

With leukemia cutis you would see more nodules. You could get a skin biopsy and they could look for the clonal cells and even do molecular on the skin biopsy. Just go to a dermatologist for a biopsy on your face. Or get them to prescribe one of the many rosacea treatments like Ivermectin and see if it resolves. It may even be unrelated to the CLL, as you said. Go to a great dermatologist to discuss further.

Thanks, LoveCures. Started Ivermectin five days ago, and waiting for progress.

EAGnostic, a few months after starting ibrutinib in 2015 I was diagnosed with rosacea. Over a period of two years I was prescribed the following treatments in succession, none of which resolved the multiple sore unsightly lesions on my face: 0.75% metronidazole, 15% Finacea, 1% metronidazole, 1% Noritate, 1% ivermectin. Finally my dermatologist prescribed a once-a-day 50mg minocycline tablet which cleared things up within a few days.

I remain on the 50mg dose along with 280mg daily ibrutinib. I don't know whether there is any connection between ibrutinib and my rosacea, but I'd never had rosacea symptoms before starting ibrutinib.

A year ago on this site there was a discussion of rosacea which you might want to check out. healthunlocked.com/cllsuppo...

gardening-girl

I'm on Doxycline (and Ivermectin), hoping to have the same cheery (cheeky?) results as you. I've been on Ib since November 2018 and Vx since February 2019, and the rosacea popped up for the first time in June 2019, so pretty similar story. Thanks for sharing yours--I hope to get the same control of rosacea symptoms. How's the Ib working for you?

So far so good! 👍

I've had Rosacea for at least 30 of my 69 years. Tetracycline was the treatment for many of those year's until it's price rose dramatically...I know treat with Doxycycline. One 100 mg pill every other day seems to keep it under control. Topicals never worked for me.

Psalm22-3 profile image
Psalm22-3 in reply to RJR1

Thanks for the reply. Glad it's working for you. Hope it does for me, too!

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