Thin skin...Roseacea: Diagnosed 5 plus years ago... - CLL Support

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Thin skin...Roseacea

RJR1
RJR1

Diagnosed 5 plus years ago, on 420 mg Imbruvica daily now for 2 years.

I've also got a facial skin condition, Roseacea ( think WC Fields ) but never to that extent as I've been treating it on and off for years with Tetracycline as occasionally needed.

Most recently it seems that I can barely touch my nose with a towel after washing without having the pores bleed.

I'm keeping tissue by the sink as well as my ever trusted " liquid bandage" but this is a real pain in the You Know What..split skin and cuts resulting from Imbruvica on your arms or fingers aren't noticeable... but on the nose they kind of stand out like Rudolph

Anyone else here with Roseacea going through this? I'll be making an appointment with a dermatologist this week and I'll also call my specialty pharmacy

Many Thanks

17 Replies
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Newdawn
NewdawnAdministrator

Sorry to hear this RJR because it’s a distressing condition. Check compatibility with the Ibrutinib but I could highly recommend Dermalex cream;

dermalex.co.uk/product/derm...

It contains no steroids or antibiotics and the pharmacist recommended it to a family member who now swears by it. It’s available over the counter and online.

Hope you get some relief soon.

Newdawn

RJR1
RJR1
in reply to Newdawn

Many thanks... just placed an order.

Sorry to hear how the rosacea has been exasperated by the imbruvica treatment. I've had rosacea for decades now, it was my first autoimmune disease (now up to 4-5) and whenever I am ill or stressed it flares. I've been on imbruvica/bactrim for 4 1/2 years and on low-dose naltrexone (LDN) for almost a year and find all the autoimmune disorders are being controlled/maintained. I also use a lotion made with CBD oil for topical flare-ups.

RJR1
RJR1
in reply to livinglifewell

Any special cbd composition? I'm in Oregon available OTC

livinglifewell
livinglifewell
in reply to RJR1

The product I use is "Allay extra strength cannibis infused lotion", it is out of Washington state.

RjR1, I'm experiencing exactly the rosacea symptoms which you describe. I've been prescribed .75% metronicazole, then azelaic acid (Finacea), then 1% metronidazole gel, and now super expensive metronidazole cream (Noritate) and nothing has helped. My only relief has come while on antibiotics for sinus infections. I have a Sept. appointment with my dermatologist who I hope will have something new to try! I'll mention the suggestions that others have posted in response to your post.

I'm on 280mg ibrutinib and haven't thought about that causing more severe rosacea symptoms. I'll be interested to hear what your dermatologist has to say.

gardening-girl

RJR1
RJR1
in reply to gardening-girl

Your mention of 280 mg Imbruvica is interesting. Was that dosage due to side effects? Are your numbers good at that dosage ?

I have just replied to you & RJR1. Please see it in reply to RJR1. Hope it helps you

Dear RJR1 & GardenGirl,

I have been on IBR for over 2 years & also have experienced "Rudolph nose" & face for that matter & a myriad of other skin side effects. I want to share what I have learned & how I have conquered all of them: My oncology dermatologist continues to save the day. She diagnosed me with a rosacea-like skin condition - so you can't treat it quite the same way as true rosacea.

My general dermatologist did not correctly diagnose my condition. Generalists do not have the specialized knowledge that's necessary. She mistakenly prescribed what would be used by someone with true rosacea, a similar course that GardenGirl wrote about: Finacea, Metro-Gel, Clindamycin. This did nothing. It got worse.

Enter my oncology dermatologist. She prescribed metronidazole cream (not the gel) twice a day and tetracycline. I have gradually gone down not the tetracycline dosage. Also only use very gentle, unscented skin care products - no oils or serums. I don't want anyone to go off of IBR due to hives, rashes, "Rudolph nose," and more so I have done a video report showing all the products and prescriptions that have helped me. To see all details on what to use on your face & body, from cleansing to moisturizing & care to anti-itching checkout my Facebook report. I just reposted it for you to easily view: Michele Nadeem-Baker. You can also see it on Patient Power. I hope this helps

RJR1
RJR1
in reply to NoMoreCLL

Thankyou... I've made notes of all comments. Seeing a basic dermatologist Thursday but I will immediately start looking for an oncology dermatologist

NoMoreCLL
NoMoreCLL
in reply to RJR1

I found mine at the center where I'm treated. I asked my oncology team & they knew who was familiar with IBR on the dermatology team. Where do you live? Maybe someone on HealthUnlocked will know of someone near you.

Hi Michele, I've just looked at your Patient Power video about ibrutinib side-effects. Thanks for posting it. What I don't understand is how the ibrutinib-related rosacea-like symptoms represent something that is, as you say, different from true rosacea. The metronidazole cream and antibiotic are exactly what are prescribed for persistent rosacea.

Actually the $99 metronidazole cream prescribed by my dermatologist has made my symptoms worse and he said the next thing will be antibiotic treatment. Did you try the antibiotic without the metronidazole cream?

Hi Gardening-girl. I can only comment on what worked for me - and it took a few months and tons of patience. From time to time I still have a flair up, which is generally from being in the summer sun too long, being outside in freezing wind too long or from a steamy room or sauna.

My regular dermatologist diagnosed this as rosacea and therefore prescribed the metro-gel, clindamycin (topical antibiotic) & finacea. This combination made what I had worse. My facial skin felt and looked like it was burned with lots of red patches and white dots & my skin flaked and peeled.

The oncology derm knew in a nano-second that it is an IBR side effect that is rosacea-like (perhaps this is why the treatments are similar) and they also see this reaction with another type of chemo for something totally different from what we have. She prescribed a high dose, 100 mg of oral doxycycline twice daily (unsure what you're taking and its dosage but the high dosage is needed. I think I was on the high dosage about 3-4 months before decreasing the dosage to 50 mg twice daily and now once daily) and metro-cream. These, along with my stopping all other skin cleansing & care products, and only using the products I shared made all the difference. By cleaning my face only with Abolene, and body with Aveeno liquid soap for sensitive skin or Dove for sensitive skin, and only Hydrolatum moisturizer slathered all over my face & body. This is it. No scrubs, no Clarisonic, no masks, no anti-aging products, no hot water, no really hot showers.

Again - this is what the oncology derm prescribed and suggested and what worked for me. I hope it can work for you as well. If you can find a specialist dermatologist that is best. A lot of the side effects of IBR are still being discovered as the drug has not been approved for very long. Please let me know if you have any other questions.

RJR1
RJR1
in reply to NoMoreCLL

Many thanks... the doxycycline is what I have but it was only prescribed as one 100mg per day. I'll ask dermatologist Thusday to bump it up. I also, or rather my wife , thinks I may have had a bit too much sun exposure recently. Apparently I've fallen asleep in my hammock a couple times and might not have adequately lathered up. I'll also follow your suggestion and move away from the harsher soaps especially for my face

Thanks Michele, what I'd really like to know is what was different about your skin presentation that made the oncology dermatologist know immediately that it was not rosacea. Since I have had rosacea since before starting ibrutinib, maybe I now have a combination of the two conditions, or maybe my rosacea is simply exacerbated by the ibrutinib. Anyway I'm really glad that the recommended treatment is working for you!

RjR1, In June of 2015 I started ibrutinib at 420mg/day and have had no significant side effects. In Dec. of 2017 I switched to 280mg/day simply because it seemed to me that at my weight and correspondingly lower blood volume, my BTK should be saturated at the 280mg/day dose, and my oncologist agreed. According to data in:

J Clin Oncol. 2013 Jan 1;31(1):88-94. doi: 10.1200/JCO.2012.42.7906. Epub 2012 Oct 8. 10.1200/JCO.2012.42.7906 or ascopubs.org/doi/pdf/10.120...

“Full occupancy of the BTK active site occurred at 2.5 mg/kg per day.’

According to that, I should achieve full occupancy at a dose of 130 mg/day, so 280mg should be plenty safe for me. So far, so good.

gardening-girl

RJR1
RJR1
in reply to gardening-girl

Interesting I've asked about reducing but position has been 420 is working

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