Insect like bites due to CLL?

[KirbyBH]

I was diagnosed with CLL in 2005 and have not needed any treatment yet. For last 7 months I have had insect like bites on and off. Itch terribly for couple of days. I read an article of a study done in Israel which confirmed some people get this due to the CLL. My hemotologist says she has never seen this? Have any of you experienced this condition and was there any solution to stopping/alleviating it?

[Tommays56]

Hi Ki

While difficult to prove as someone who had some difficult and MD documented Allergy issues before CLL

They got much worse afterwards and it took a few years to adjust and medicate correctly

[cllady01 Former Volunteer]

Kirby, are you being bitten by something? Are you allergic to something? The reports we have had are mostly of actual insect bite reactions being more difficult to deal with than before having CLL.

It sounds as though there is something "bugging" you--unless you have a rash like breakout.

You would be well-served to see a dermatologist for a good overall checkup of your skin. CLL patients need to be aware of the possibility of secondary cancers and one of those is skin cancer. Please understand, I am not suggesting you have skin cancer--I am encouraging you to get a checkup of your skin by a dermatologist who can pick up any moles or growths that you may have.

[KirbyBH in reply to cllady01]

Have consulted with Dermatologist and she is not sure either what it is. Had house checked and sprayed and nothing found either. Husband not getting the "bites" and if insects I assume he would also be getting them. Trying to determine if anyone else diagnosed with CLL has had this problem.

[Jotame]

I believe my extreme reaction to mosquito bites is due to CCL since this reaction only developed around the time of diagnosis (3yrs). I also developed autoimmune hypothyroidism at the same time - but this seems very common and is harder to link.

My haematologist discounts the possibility that either is linked.

[Jotame]

Also I did experience several months where I appeared to be getting insect bites in bed, but husband not. This was before diagnosis but v possibly early in my CLL. Eventually in desperation I used aerosol cans of flea bomb (from the supermarket) and closed doors and windows for several hours. I never saw an insect but this fixed the problem .

[1ofakind]

I also had this problem last summer

Family Doc had no idea what it was ...Nobody else at home had these bites . It started with one on my back and spread on my back and then upper thighs...

Doctor ruled out shingles and said they look like bites .... It subsided for a while and then about a month later recurred ... checked it out again and the doctor said ..looks like bites ... and then they disappeared..

By the time I saw the Hemotologist , the “bites” were gone....and I forgot to mention the experience .

If I recall , this past summer there were several posts about sensitivity to insect bites....

It was upsetting but hope yours disappear and that you feel better quickly .

[Shedman]

A few thoughts:

- try to get photos of skin involved with rash or itching sensations, and any visible changes to these, email them to yourself with your description of timing / feeling / etc

- look up images of, and familiarise yourself with:

Petechia

Changes to skin/moles indicative of skin cancer

Rashes associated with shingles

And we all need think about annual dermatology skin check ups.

Anything that amounts to a rash you should photograph and try to see a dr to diagnose.. insect bites are more variable or dispersed.

Shingles has a treatment (antivirals) window of 48-72 hours; speed getting to your primary care or CLL doctor is of the essence.

[JustAGuy]

Hi, I get random spots and even groups of them like a rash. They come and go in 3 or 4 days. They have been on belly, back, arms, legs, neck. I believe it is connected to my CLL. Dermatologist doesn't know what it is and hematologist seems like he doesn't care about that. I know several of the members reporting similar...

[thompsonellen]

I'm still scratching where I got bites in September. If you search online, you will see plenty of documentation that this is unfortunately common. Wish I had a solution for you.

[Italianpainter]

Yes, I have. If you google CLL and skin reactions/insect bites hopefully you'll find the article I did which says 25% of people with CLL develop skin reactions that can look like papules, which mind did, lesions, plaques or nodules. That article also says that these people can also experience exaggerated reactions to insect bites. I wish i knew how to attach a couple of pictures here to show you the 2 bites I had . One near my elbow that swelled to my arm pit and half way down my foerarm. Needed medrol dose pac for that. And another on my face that swelled hugely so that one half of my face looked like a giant red balloon ready to burst! Given that my oncologist had seen the papular rash, he agreed that my reaction to bites was related to the CLL. With the rash which occurred first, he had me see a dermatologist( who frankly was as dumb as dirt!) who did do a biopsy. The pathologists report said that it was "an unspecified urticaria likely due to some internal process". That made me think allergy or histamine reaction. On my own I started taking antihistamines. Eventually got to 4 doses a day. That controlled the rash. Saw a different dermatologist who told me that the first dermatologist should have told me to start taking antihistamines. I'm a nurse and no slouch where medical information and sleuthing come naturally to me. She saw the bites and gave me a medrol injection for the one one my face. People who have CLL are 8 times more prone to skin cancers than the average population. So she told me to always take antihistamines for the rash. The added benefit of the antihistamines was that my sinuses were under attack from the CLL. I had 4 sinus infections in a year. Those treatments helped my sinus problems considerably. I took 2 Zyrtec a day and benadryl at night. But check with a dermatologist on treatment. I am now on treatment (imbruvica and will add venetoclax this month). So far, so good!

And yes, the bites itched like a son of!!

[KirbyBH in reply to Italianpainter]

Thanks for your response. I did see that article on the internet but my Hemotologist dismissed it. I am going to find someone who specializes in CLL. I will try the antihistamines. Had a biopsy through dermatologist and same results. They really didn't know what it was. And yes the itching on day 2-4 is horrible.

[LovecuresCLL]

The skin lesion we need to be most concerned about is SHINGLES. They are painfully itchy and occur in groups and clusters and mimic insect bites. Even the “dopey” doctors miss shingles constantly because if it’s not one-sided (dermatomal) pattern.....the dopey doctors say that can’t be shingles or it’s probably not shingles if not one-sided but I am living proof it can go across the midline and be all over my body especially on my face and neck. Shingles is a nightmare. I had it three times.

Also I do get exaggerated bug bite reactions but don’t assume it’s bug bites unless you have evidence of the bugs biting you for sure. It’s shingles until proven otherwise. Shingles can be treated. So find a great dermatologist to help you with any skin lesions including bug bites and don’t rely on oncologist-hematologist to diagnose skin lesions. They are usually horrible at skin diseases as they have no skin training.

[livinglifewell]

Hi Kirby, how frustrating to be chasing after the reason for the 'rash' that is defying diagnosis. I went through this for over a year while it was mistakenly called x, y, and z which were all wrong. The red spots waxed and waned, then they abrutly became blisters. The pruritis was INSANE all throughout. Biopsies were done and I was finally diagosed with bullous pemphigoid which is a para-neoplastic syndrome which is an autoimmune disorder affiliated (rarely) with CLL/SLL. It has taken seven years for it to go into remission. The successful treatment turned out to be IVIG infusions. We walk difficult paths with this disease.

[Smakwater]

I have known persons with CLL who after being confirmed to have significantly suppressed immune systems whether from disease progression or post therapy to produce a more aggravated response from bug bites than they did before.

JM

[starsafta]

I also have exaggerated responses to bug bites, and they can take weeks to heal. A couple years ago, some swelled prominently, some became infected, and one on my ankle formed a fluid filled sac that grew to 36mm wide and 12mm high. I finally pricked it with a sterilized needle and it drained for days.

It is important not to scratch so they don't become infected. To alleviate itching, I use a hair dryer, held a couple inches from the bite, for 15-20 seconds. The heat gets blood flowing and the itching ceases, usually for a few hours. I use it before going to bed so I don't scratch in my sleep. Standing in a hot shower can achieve the same result. I also use calendula cream, which has anti-microbial properties and often alleviates itching.

Not wanting more infections, I am hyper-vigilant about bites now, using triple antibiotic cream in any that look as if they want to morph into infection. I'm not a medication person, and stay away from antihistamines.

I now try to avoid getting bites in the summer, using Eucalyptus-based repellent when gardening. My dermatologist encouraged me to use strong deet-based repellent, and I've succumbed in appropriate conditions.

These bites are nasty!

[Flyfisher70]

I became much more susceptible to bug bites and they became inflamed and extremely itchy. I iced them and tried not to scratch but it was tough. I started using heavy duty insect repellent any time I went out

[hope-73]

Hi,

just saw your post and it looks like you had exactly what my husband is experiencing right now. Have things got any better? If so, was that spontaneous or did you start some kind of treatment for this specific problem?

My husband is taking antihistamines but no results so far.

Many thanks

[KirbyBH in reply to hope-73]

Like most of the people responding all the doctors I saw did not think it was due to CLL. That is dermatologist, oncologist and general intern. I have had the flare ups 2 x's now and they definitely look and feel like bites. Also, had a biopsy with no definite idea what it was. I think it is some reaction to bug bite as the last flare up occurred after Thanksgiving. Had Thanksgiving dinner in my daughter's yard (due to Covid) and did get 2 mosquito bites on the back of my neck. After that, the bites began over different parts of my body. They mostly come in trunk and upper body areas. It did seem that this flare up was not as severe or as itchy as the first two times it happened. I have not had any "bites" for several months now and am hoping gone for good. I am mostly in the house now due to Covid but if I go out try and wear long sleeves and use bug repellent. If you do not want to use something toxic I have read that Bounce sheets (used in laundry) can be rubbed on your skin and repels bugs.Good luck and hang in there. I know how frustrating and uncomfortable it can be.

[hope-73 in reply to KirbyBH]

Thanks a lot for your answer. I am fairly certain my husband's spots are not insect bites. The dermatologist actually said they are related in some way to his CLL. After accepting this, it would be nice to know how to treat the itchy spots, besides treating CLL itself (W&W 1 year).

[KirbyBH in reply to hope-73]

My dermatologist was the only one who said it could be related to CLL. Even went to a CLL specialist and he checked with colleagues and they all said no. However, I believe it was a reaction to bites and due to the CLL had this reaction. Was given a RX cream called Triamcinolone Acetonide Cream 0.1%. I helped a little but not much more than regular Hydrocortisone 1% over the counter. Also, started on antihistamine. Dr. suggested Zyrtec but was too strong for me so I used Allegra instead. Good luck!