Body rash

[cartwheels]

For the last 5 weeks I have been under the weather started with a itchy rash then full on flu like symptoms,saw a doctor who said dermatitis and gave me antibiotics and steroids still got a bit of flu and still although much improved my rash and raised bumps are still there . Got my 3 monthly in a few weeks so will mention this . I have been on ibrutinib for nearly 6 years and I'm now thinking maybe this is the first signs of it failing got no enlarged nodes as of yet . But I did suffer with skin conditions prior to treatment. I have lost weight as well although that might be through being ill and stress.Thoughts anyone

[Panz]

Good day to you. Just a note on the rash issue you are having. I am on Calquence and had a several rashes in the beginning and nothing over the counter was helping. My hematologist prescribed Triamcinolone Acetonide Cream that helped for a day or so and then stopped working. My dermatologist saw the bag of all the things I had tried and said that the hematologist was on the right track but that I needed a stronger steroid cream and she prescribed Clobetasol Propionate and BINGO!!! That cleared up all rashes!!!

I am not a doctor but I can tell you what worked for me. My rashes itched so badly it was driving me crazy!!! The bumps disappeared too.

I hope you are able to get this solved! All the very best.

HAPPY NEW YEAR!

Panz🙏💕☘️🌴👍🌈

[cartwheels in reply to Panz]

Thanks I'm on a 6 week course of steroid ointment twice a day for two , weeks,then once a day for two weeks then once every other day which is where I am now . It's improved but still there also have a itchy scalp and non itchy bumps on my face

[Tapps in reply to cartwheels]

Do you have a full body red itchy rash? How are you doing with the powerful Steroid cream? We’ll try your treatment plan Twice a day for two weeks, then once a day for two weeks, then once a day, every other day

How long will the Doctor let you stay in this powerful steroid???? What if it is still there at the end of six weeks?? Please keep us posted !

Thank you: Be well friend

[CCgroup in reply to Panz]

Thanks, Panz. I'm having the same thing, and am 2 1/2 years on ibrutinib. I'll give that a try.

Dan

[Panz in reply to CCgroup]

if you are like I was you will try anything!!! HAPPY NEW YEAR!!! All the very best to you!

Panz 🙂🙏🌈🌴☘️

[Tapps in reply to Panz]

That’s for sure!

[lankisterguy Volunteer]

Hi cartwheels,

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A rash from Ibrutinib is one of our frequent past postings. You can see some of those in the box on this page labeled Related Posts

*CLL and full body rash

*UPDATE ON HUSBANDS BODY RASH

*All over body rash - update

*Rash spots over the body

*Rash all over body - might it be shingles

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This link will take you to the 438 times rash was mentioned in a past posting:

healthunlocked.com/cllsuppo...

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I have had a rash on my legs, arms and torso (mostly small light red dots connected in a web pattern –most days no itch or discomfort) since 2006 before my CLL diagnosis in 2008.

Each of the 6 times I was treated for my CLL it got visibly worse, but Ibrutinib made it much worse- angry red & itchy.

I also have lots of seborrheic keratosis that seem to wax and wane along with the red dots and rashes. Over the years I've had many biopsies; dermatologists and pathologists postulated Psoriasis, Eczema, drug reactions, and more recently CTCL or Mycosis Fungoides.

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The common result from expert pathologists that ran flow cytometry on the biopsy, was finding many T-cells and CLL cells in a specific layer of my skin. But the puzzle is why they are there.

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My most successful treatment was Photo therapy (lightbox treatment with UVB rays 3X per week- similar to a stand up tanning bed, but with medical precision on light frequency and duration).

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My CLL expert doctor believes that it is caused by a HHV-6a infection (roseola infantum or exanthem subitum) which we discovered in 2012 but like most of the HHV viruses is not curable and stays dormant in our cells until the immune system declines and it re-emerges. en.wikipedia.org/wiki/Herpe... ref: HHV 3 is Chickenpox & Shingles, HHV 4 is EBV & Mononucleosis.

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The NIH has several papers suggesting that CLL itself leads to skin issues, as noted here:

ncbi.nlm.nih.gov/pubmed/174...

SNIP: "Cutaneous lesions occur in up to 25% of patients with chronic lymphocytic leukemia (CLL). These can be caused by either cutaneous seeding by leukemic cells (leukemia cutis, LC) and other malignant diseases or nonmalignant disorders. Skin infiltration with B-lymphocyte CLL manifests as solitary, grouped, or generalized papules, plaques, nodules, or large tumors.....The most common secondary cutaneous changes seen in CLL are those of infectious or hemorrhagic origin. Other secondary lesions present as vasculitis, purpura, generalized pruritus, exfoliative erythroderma, and paraneoplastic pemphigus. An exaggerated reaction to an insect bite and insect bite-like reactions have been also observed".

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Len

[cartwheels in reply to lankisterguy]

Thanks that's very interesting, I think it's a combination of bacterial and immune disorder issues made worse by having had the flu and winter. Interesting my sister in-law who saw pics of my rash and Is a doctor thought I might have had scarlet fever which has been rife in the UK this winter

[lankisterguy Volunteer in reply to cartwheels]

As you can expect from the wide divergence of the experiences we CLL patients report- having CLL makes us immune compromised, so we can be plagued with any bacterial, viral or fungal infection being spread in our community.

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I got Whooping Cough / Pertussis in California in 2010 and didn't figure it out until several days of coughing while on vacation in rural Turkey. I probably was the source of an outbreak there.

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My CLL expert blames my skin issues on a Virus, my dermatologist blames it on CLL, the pathologist calls it T-cell dyscrasia, and they are all top researchers at a major university hospital. And they all began diagnosing it in 2012 and still don't agree.

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Len

[Pacificview in reply to lankisterguy]

Ah, our common dilema. Is it CLL caused or something. Well it depends on which Doctor you talk to. Sure can get a bit frustrating sometimes.

[JigFettler Volunteer]

Hi! Are you scratching? Jig

[cartwheels in reply to JigFettler]

Yes but trying not to , as I say it's lots better then it was which was awful all over my body now just areas here and there worse at present is scalp

[JigFettler Volunteer in reply to cartwheels]

Itch scratch itch cycle. Is this something you have addressed?

ncbi.nlm.nih.gov/pmc/articl...

It's a complex thing.

Jig

[cartwheels in reply to JigFettler]

Very interesting, and I stopped using a anti depressant in the summer as I wanted to cut down my pill intake,but recently thought that if I was to restart taking them ,then they would probably help with the rash ,itch scratch circleMany thanks

[annmcgowan]

Hibi have had an itchy rash for about 3 months now. GP said dermatitis and treat but not gone yet. I asked haemotogist if it was ibrutinib, I am 4.9 years in now. He said no I would have had rash from the start if it was. He never mentioned ibrutinib failure and I am not thinking that way. I hope this reassured you.

Ann

[SofiaDeo in reply to annmcgowan]

I doubt this is true. It may be "more likely" that one gets a rash early on, but no guarantees. And the rash doesn't always equal drug failure. The drug worked great on me, the rash started a bit into treatment, and the drug kept working. There's only 1 recent study on rash onset with ibrutinib I can find, IDK why the hematologist is so certain. The numbers of patients are small and not statistically significant, more of a "this is what we are seeing, FYI everyone". I researched this *extensively* when I first got it. BTK is involved in many body processes, and since so many things can tip ones body into "rash" development, it's difficult to say something is definitely not a contributor unless you remove the suspected offender, and see if it works.

ncbi.nlm.nih.gov/pmc/articl...

onlinelibrary.wiley.com/doi...

So in this vein, I would look at things in your environment that have possibly changed, that may be affecting your skin. Commercial products change their formulations, so one we may have used for years might be the offender. Too much laundry detergent or fabric softener, or either of them not getting rinsed fully, can do it. Febreze or other "air freshener" chemicals in the air or sprayed on furniture/clothing. Commercial food products also change formulations, and in the US there can be up to 2% additive before it must be listed on a label. Shampoos, body wash, lotion, makeup, hair products, perfumes, sunscreen, new clothing, all can cause a full body rash. If your scalp/face is the worst, I would suspect a hair or face product. Or something in or on a bed pillow. Or a hat. If a pet curls up on your bed pillow a lot. Even if you have used something for years and the formula hasn't changed, *you* have, and a formerly benign product can start to cause problems. Our immune systems are wonky and can be reactive.

[annmcgowan in reply to SofiaDeo]

Hi I have tried and changed potential domestic, cosmetics and drug factors with no success. As my itch is on my scalp, forehead, back and upper arms my GP treat as eczema to begin with then a fungal infection, neither worked long term. They all seem to work for a while then stop. My GP is now referring me to a dermatologist but I will take the matter up with my haematologist again after reading this post. Thanks for the heads up.

Ann

[cartwheels in reply to annmcgowan]

That sounds very similar to myself

[SofiaDeo in reply to annmcgowan]

IDK if you have had any blood inflammatory markers tested recently? When I was having the skin problems on ibrutinib, the lesions biopsy came back as eczematous and my blood tests were negative for generalized inflammation. Eosinophils were low.

Could there be inhaled molds or other allergens? Is it possible to take a short ibrutinib holiday, to see if the problem clears? It must be awful to have to deal with this.

[annmcgowan in reply to SofiaDeo]

Thanks for that information, I haven’t had any biopsy done but I will take that up with my GP and haematologist. Your right it is horrible and very stressful.

Ann

[Pacificview in reply to SofiaDeo]

Awesome advice!

[cartwheels]

Yes I'm not to sure it's because of ibrutinib itself, could be first sign of failure or as you said a variety of things from viruses to detergents

[CycleWonder]

I’m a different BTK, Pitrobrutinib. I noticed before treatment that my skin is more sensitive in general. It reacts more to irritants, both environmental and food. So I try to take better care of my skin - more cream; I am careful to note which foods cause me issues. And I don’t like putting on cream - I’ve always resisted doing this. But now it’s a necessity.

My skin has not gotten worse in Pitrobrutinib nor has it became less sensitive.

I believe it is do to the CLL but I don’t know the mechanism.

[SofiaDeo in reply to CycleWonder]

I like to use various natural oils instead of proprietary creams. Safflower oil is lighter and on me, less greasy/oily than, say, coconut oil. I vary them, going from safflower/sunflower, kukui nut, nilotica shea oil/butter, and coconut, depending on the season and how dry my skin happens to be acting. I also recently started to use a rosehip seed oil that seems to absorb faster than the heavier food type oils.

[CycleWonder in reply to SofiaDeo]

I use really light creams due to my aversion to creams but I do use commercially available ones.

[Hoffy]

I checked my IGE and it is very high and I Think it might drive my itching. Mine is about 5000 and should be 100

Imbruvica helps control my itch. If I am off for a few days I get more itchy.

Itching kind of comes and goes.

An Epsom salt bath seems to help my itching a bit.

Strong steroid creams definitely helps.

When I was on Imbruvica plus Venetoclax my IGE came down to 100 and I was less itchy. Since then my IgE keeps going up over the last 4 years.

Be well,

Hoffy

[1susiE]

did you test for covid? rash can be the starthealthline.com/health/skin-...

[Hidden]

I have never taken meds or anytime of chemo and have lots of skin problems rashes,dry red patches in face raised bumps and they do not go away....not sure how long you have had CLL ....I am at 11 years and almost 4 months...and I say I am not having fun ...flue like symptoms all the time.....soar throat...Dry cough...I think I am in stage 3 just from my research on symptoms and white count..Hope this Helps... it's just part of the CLL..I would Research Symptoms they are so much like covid also ...... Happy New year....

[Pacificview in reply to Hidden]

So sorry your symptoms are such a pain. Have you been offered treatment yet? Are you trying to wait as long as possible to treat?Thank you for sharing your experience and Happy New Year!

[Hidden in reply to Pacificview]

No treatment.. Doctor did mention...But I think I would prefer not to do treatment..my sister only lived Seven years with treatment..so far I am sick a lot but I am still hear ...

[Hidden in reply to Hidden]

Here not hear

[Stamphappy]

Cartwheels, geez I hope you're feeling better really soon. Sounds miserable. Hug! This conversation has me wondering about itchy bumps that have come and gone around my head & neck since 2015. Since diagnosed with CLL in 2021, I wondered if it was related. Now my hands have dry peeling areas between the fingers. Over the counter hydrocortisone helps my hands but doesn't clear it. A recent pet addition my have something to do with that. I'm W&W. Thanks for posting. I wish you better health in 2023.

[Pacificview in reply to Stamphappy]

CLL can cause skin issues. I get the itchy small pink bumps sometimes etc. I use anti itch cream and moisture creams for relief.

[Stamphappy in reply to Pacificview]

Hello Pacificview. I feel like I've tried everything. Winter cold on top of washing hands so often is tough on the skin. I've got a feeling once it warms up enough to eat my own garden crops, my hand issues will mostly resolve. My diet keeps the rest of my skin in great condition-with the exception of those itchy bumps around my hairline.Thanks for replying.

I wish you a happy & well 2023 😊

[cartwheels in reply to Stamphappy]

I was DX 2015 17p so not great started ibrutinib 2017 with side effects but after 18 months they were all but gone and I have lived a almost normal life since , this is the first really bad experience I have had . And part of me actually think it might be due to my 5/6 th covid jabs as this has started since then along with pins and needles and numb arms etc first two weeks after each jab . Although I'm pro vaccine the is clear evidence that there is at least 15% cardiac problems many minior with the jabs so no more for me

[02Raspy]

I also have developed a nasty, itchy rash all over my body. For me it started about three months before treatment. The Dermatologist said it is eczema but I am pretty sure it is associated with CLL. I have now started Gazayva infusions and thing have marginally improved. Not sure that is from the Gazayva or the large doses of Benadryl and Pepcid that accompanies transfusions. I hope it gets better so I can get back in my hot tub!

[Vlaminck]

Just a thought. Do you get enough vitamin D and A retinol? They used to make an A&D cream I used for my son when a child and he'd get bumps especially on arms, but don't recall that they itched. Also, of course, Omega 3 oils These might not help at all, but if not taken in excess, should be good for you anyway if you aren't taking and just maybe make a difference? I have recently read that deficiency of one of the vitamin Bs can induce seboreic (sp) keratosis which I wish I'd known before my dad died as he suffered from that.

[cartwheels in reply to Vlaminck]

Yes I take vit d 3 every day but not vit b which I used to so maybe

[Vlaminck in reply to cartwheels]

maybe try some A (the retinoic type, not beta carotine)--not more than 10K U, and not every day, but every few days. Just maybe?

[skipro]

sorry to hear about the rash.

I had one for 9 months following the first rituximab infusion

Not sure about the Ibrutinib?

Good luck and lots of prayers to you

Skipro

[Hectanooga]

I have been in Ibrutinib and Acalaibrutinub since 2019. I have constant dermatological issues, including frequent eczema rashes. I believe it is a side effect.

[Westie11- in reply to Hectanooga]

Thanks for your comment. I am too am on Acalabrutinib and have a few skin problems, mainly one on finger where i usually wear a ring and one on other hand. I also have chilblains in my left foot which get very itchy!! It would seem after reading all the comments its down to medication.

[GigiJen]

I just started my seventh year on ibrutinib. For the last 6+ months I have had issues with rashes on my arms that are very itchy. I don’t know what else it could be except the ibrutinib. As far as my numbers, I’m still stable, thankfully.

Making good thoughts for you and hope you feel better soon.

[Fant1924]

I too have had rashes that itch. I have used both steriod cream and calamine lotion. When I combine either with a hair dryer set on hot either work better. I was using the dryer in order to dress quickly and slowly learned that the dryer helps reduce the itch, particularly when set on high heat. You will want to scratch while using the dryer but don’t. The itch will ease.

Dennis, 75, Venetoclax, recovering from hip resurfacing

[Kingfish6]

Hi. In reading post & replies, has anyone been put on Dupixent? I'm on Imbruvica for > 4 years, itching. Have a dermo-onc., who is thorough. Dupixent is sorta new, injections (you), continuous, $, targeting eczema.

[Tapps in reply to Kingfish6]

What did your Oncologist/Dermatologist think of Dupixent?

Husband three weeks on Dupixent. Noticed a clearer skin after two days. After three weeks, just this evening, some of the red has returned, on the back.

[Tapps]

Has your Dermatologist suggested Dupixent?

Injections, with a Steroid cream?

[cartwheels in reply to Tapps]

Condition is clearing up now back on antibiotics and steroid cream. I think it was triggered by my flu like illness I had they actually think it may have been scarlet fever although not sure.whatever the antibiotics seem key to winning the battle the first two weeks course got rid of 50% but I still had a bad cough etc . Then after a week it started to come back so now on another two weeks course and it's 90% gone now and I have another 5 days antibiotics left so hopefully might beat it now .

[SofiaDeo in reply to cartwheels]

My FIL had a full body rash that was finally thought to be started as a post-viral syndrome. It's totally possible an initial skin irritation led to bacterial/fungal normal flora overgrowth, or infection with another bug like an uncommon Strep that causes the definitive "scarlet fever". He had to take Humira injections for a solid year, but he also refused to see the doc for mmm 7-8 months and it was really advanced/inflamed. I hope this clears up completely for you, and soon!

[Kingfish6 in reply to Tapps]

Yes, doc is thorough. Medicare/ins approved it @ $200/mo out of pocket, but I'm hesitant. Besides itchiness, skin probs don't show up until I scratch

[cartwheels]

Yes I believe mine is a comb of bacterial and fungal caused by a viral infection and this makes it tricky to treat as I seem to clear the viral rash with antibiotics then get a fungal type rash which when treated with dactacort gives me a hives type rash and the circle goes on . Think I'm winning at present thanks

[SofiaDeo in reply to cartwheels]

Maybe consider getting a high quality expeller pressed food grade coconut oil to apply on your skin at least once a day? If some of this problem is overgrowth of normal flora, or disruption of normal skin barrier, applying it just after bathing may help a bit. It absorbs in fairly quickly. It may not be a good idea if you have oily skin, or your pores tend to clog. I like it, it's not super expensive (compared to things like CeraVe or other high quality skin products), it has no stabilizers or preservatives or other things to irritate skin. It doesn't get rancid quickly, won't attract insects like olive or other food oils might.

healthline.com/nutrition/co...

[Tapps]

Good to know that you are getting a handle on your Rash. Good Luck.

[greger]

My wife had a rash develop after a few months on Ibrutinib. She switched to Venetoclax and had no rash. Her skin is very sensative to rash from medications. She's been on Venetoclax two years.

[Tapps in reply to greger]

Husband has been on Ibrutinib for 2 1/2 years. Has been doing well on it, until this Horrible Full Body Rash: Now on an Eczema drug: Dupixent: injection every other week: At first, skin was clearing, looked great, now the rash is coming back; doing oatmeal baths, heavy cream: No mention of changing of BTK drug , Happy your wife is doing well, hopefully we’ll be able to report back with the same; Take care Friends