I recently visited my dermatologist with a rash that was popping up all over my body especially on my upper chest. I was diagnosed with CLL/SLL about 5 years ago and I’m still in the W & W stage. The biopsy showed that the rash was due to a bug bite of some sort and if it didn’t go away I should return for further study. After several months of applying a prescription lotion it’s almost gone.
The only bug bite to my knowledge has been a mosquito bite and I’m wondering if anyone else has had this type of experience. This was a first for me. Thanks so much in advance, I truly appreciate everyone’s knowledge and insight.
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Willowbug
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Mosquito bites are problematic for pretty much everyone with CLL, first the overreaction to the bites then the infection in the bite with the a suppressed immune system.
hi Willowbug. There are also a few of us, with CLL who get extreme reactions to mosquito bites. It’s still quite unusual in the CLL community to have the extreme version. But it’s something specific to CLL but only in a few. I saw a dermatologist 3 years prior to my diagnosis of CLL to see if I had an allergy to mosquitoes because I hit cellulitis so often. He wrote to my dr re keeping antibiotics at home, which changed my life lol! He didn’t do a blood test but called me “hyper sensitive and reactive”. It was only years later, when diagnosed with CLL, after having it for three years, that they told me the link.
My mosquito bites blister in the centre and then always get infected and cause cellulitis within 48 hrs. I have therefore been told to keep a supply of antibiotics at home.
I therefore avoid bites like the plague lol!
Weirdly, the second I started treatment, the mosquitos started to hate me, and still do 12 months later lol! X
My reaction to bug bites has also got so much worse since having CLL. Especially when on FCR and now when I'm on rituximab and venetoclax. Nothing seems to help. X
this paper is a recent one. I think very few of us would need to go to the extreme of taking dupulimumab, but it’s very interesting to read their thoughts on why the extreme version happens in some people, and the extra sensitivity in a lot more people with CLL. Until I showed photos of my bites progression to my dr, nobody realised how severe they were. The blisters were about 4cm diameter x
I had exactly the same problem and the dermatologist at the Mayo Clinic indicated it was due to my CLL, and that once successfully treated it would subside. I have been on acalabrutinib for three years and, indeed, the skin issue have resolved.
willowbug. Yes. I’ve had that for years. Dermatologist linked it to cll, advised me to take allergan or Zyrtec if not Benadryl. The itchy bumps go all over from one bite. My best defense is covering up fairly completely. Bill
My skin became super sensitive as my CLL progressed and during the first six weeks of treatment. It is better now but I am careful to shower immediately after any activity that causes me to sweat. These days that includes just an after dinner walk!
If you have clusters of bites and many of them, like a rash, they are unlikely to be mosquito, more likely mites. I had that kind of thing come up on my arms and neck, after cutting creeper away from the wall of my house and getting showered with the remains of a bird nest. The rash was almost certainly bites inflicted by bird mites, which inhabit nests in their hundreds. Bird mites can survive a few weeks without a host, and readily transfer to humans hawkeyebirdcontrol.co.uk/bi...
Hi Willowbug,Love the name!. I too Hava severe allergic reactions to bug / spider bites. I had my oncologist dermatologist look at it and he prescribed an antibiotic and an anti itching cream. My bite was localized in.my inner elbow and had a huge blister. According to my dermatologist- some CLL patients have sensitivity to bug bites and need to be more careful. Glad you're doing better! Take care especially with the summer bugs!
My sympathies. The itching & burning is a nightmare & to add insult to injury this time they've scarred which is a new one on me! My dermatologist recommended daily antihistamines & prescribed Clobetasol which isn't available over the counter, when she saw a mosquito bite a week old.
I learned that I scratch in my sleep, with my heels when the bites are on my lower limbs & that's when they get infected, swell etc., & antibiotics are required. For me I know it's vital to cover up, use bug spray (personally if it doesn't contain deet it doesn't work) & when, not if, I'm bitten treat early, no scratching & steroid cream to avoid the need for antibiotics.
I also had severe reactions to mosquito bites when I first had CLL, but my treatment with Ibrutinib seems to make my blood less appealing to the little guys. I’ll take this positive side effect any time!
After being diagnosed with CLL In 2022, I also noticed that mosquitos suddenly like me and that their bites were much more intense and prone to infection. I live in the country- so spray myself down religiously now for the outdoors.
Back in 2013, I suddenly began having exaggerated inflammation from bee stings. I've had three bee stings in the past 11 years with each winding up as cellulitis. Now that I am reading others' experiences, I understand that this was probably due to pre-CLL
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