I've been recently diagnosed with CLL and I am on "watch and wait". Although I'm not yet receiving any treatment, I have started to suffer badly with eczema - red, angry blotches on my face and neck together with dry, cracked skin on my palms and around my eyes - in spite of moisturising every hour. My haematologist said that it's not a known CLL symptom and referred me to a dermatologist, who isn't sure what's causing it.
Anyone else experienced similar symptoms?
In case it's relevant, I've been diagnosed with ATM deletion, but normal TP53.
Thanks!
Written by
TonyBr
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I am glad your doctor referred you to a dermatologist. I have a long history of skin problems that were misdiagnosed as eczema. My CLL specialist told me that about 25% of CLL patients have some form of skin conditions.
I pray that you'll find out what's going on and hopefully resolve your skin problems.
The skin is one huge immune barrier, so an immune system compromised by CLL means that there are less competent border guards looking after our body's interests.
Not everyone with CLL suffers from skin conditions but they are reasonably common.
I'm afraid I don't know the answer on what to do about healing your condition.
In terms of maintenance, if ever I have a skin problem similar to eczema, I use fresh aloe vera directly on the skin. We keep a few plants growing in the garden - it is our pharmacy.
I have had eczema as a child., but it was dormant for a long time. A few years after my CLL diagnosis it flared up again then died down. Recently it has come back on my left hand I have felt an urge to scratch. My CLL, so far, is indolent my blood counts ALC and WBC are relatively low and stable 20s and 30s) and have not needed treatment even though I was diagnosed in 2008. I don't know if there is any connection between the recurrence of eczema and the CLL
Make sure your vitamin D level is healthy, I know of a couple of people that were very low and suffering from skin issues, adjusting their D levels helped, remember D takes 90 days to maximize in your system, might be worth a try, Good Luck!
Thanks for that. Not much chance in Manchester of getting vitamin D through sunshine at the moment, so have been taking vitamin D supplements. Perhaps I should get my vitamin D level checked.
testing is probably wise, when I was diagnosed with CLL, I had been taking 2000iu and was tested and I was severely deficient, most need much more then they think.
I have had recurrent eczema on my hands for many years. It has been at its worst when working in a places which only had hand driers. Since being diagnosed with CLL, I have been getting very sore patches and dryness on some fingers. I seem to have more allergies than before and existing sensitivities have got worse. It turns out that I have a latex allergy so wearing gloves was making it worse. I now wear blue (sensitive) Marigolds or nitrile latex free disposable gloves. Oat-based creams seem to help me too, Lush do their Dream Cream, but others are available. I avoid E45 as I’m sensitive to Lanolin and Aqueous Cream as it contains Paraffin and Sodium Lauryl Sulphate (SLS). I avoid SLS in shampoo, liquid soap and toothpaste as it is a drying skin irritant. Just got new glasses to read all the small print!
I was diagnosed in 2005 and am still wait and watch. I started getting big itchy bite-like break outs last May. I found an article re a study done in Israel that said this could be a side effect of CLL. All Drs. tx me for the CLL do not think it is, however, my dermatologist thinks it could be. The break outs have gotten less and I have not had any new ones in a couple of weeks. I am hoping this is going away. We had house sprayed to make sure not bug related and my husband has not gotten them. I still think it is CLL related. Before this I have never had any skin issues.
Hi KirbyBH, seems like most of the hematologists don't think any of these issues are cll related. We seem to share many of the same issues. While I am on W and W and am happy not to need treatment so far, there are days when I feel fine and days when I do not generally feel well at all. And I have been very lucky to have been very healthy until the cll. It seems like the doc don't understand and thinks I am talking about nothing of significance. But that may be somewhat true.
Hi TonyBr, I have never had any skin issues until my cll diagnosis. I have some skin issues near my hairline on my forehead and on my scalp. It has been there for about the past 2 years. I had it when I think the cll was starting and still do. It has improved a little but it is bothersome. I have an appt with the dermatologist next week. Hopefully, he/she can recommend something to treat it. If there is something definitive I will post it. Hang in there! It seems to be a common issue for those of us with cll.
Thanks Gman2. I also had issues at my hairline, as well as itchy, red botches on my cheeks and neck. It does seem to be a common issue for people with CLL, in spite of what my haematologist says.
You can do a google search under " Israeli study regarding cll and insect like bites" to see the article I read. There are also many other studies and articles regarding cll and skin issues.
I find it interesting that none of the CLL doctors think the condition is due to CLL however there are all these articles and my dermatologist thinks it may be!!
My mild case of eczema - feet and knees - has gotten a little worse as I've gotten older or due to CLL. 23andMe says I do have a genetic marker or 2 for psoriasis. I figure with all the immune disregulation, some things like this may be more pronounced.
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