I have cold uticaria that leaves me covered in... - CLL Support
I have cold uticaria that leaves me covered in hives when I am exposed to a cool wind. Any other sufferers who have CLL as well?
Hi there, Yes, I was diagnosed with SLL (much the same as CLL) in July this year. I am currently on 'watch& wait' with a 3 monthly check-up. I have other problems which affect me more than the SLL, joints, muscles, arthritis - and COLD URTICARIA! I have had the C.U. since 2002 and for a few years I took an anti-histamine tablet daily. This made me feel tired all the time (with the other medication I was on) so I stopped taking that in 2007. The only difference it made was that it stopped me itching so much. Otherwise it made no difference.
It is a very annoying and embarassing complaint I am sure you would agree. People don't understand it, they think I feel the cold, but it is not that as you know. I burn like you wouldn't believe and it is most uncomfortable, then the itching starts and if I scratch I get bruises all over (because I take steroids). Does any of this sound the same as you have? I live in Norfolk - where are you? Hope some of this has helped. x
This sounds so familiar - glad you remarked about the bruises - on some occasions my legs look like the have been pebble dashed as I am covered in tiny bruises - on one particular occasion last summer, I was walking along the beach at Wells Next to Sea - I was wearing leggings - when I returned to the carpark, the area on my legs between where the leggings ended and the socks started I was covered in bruises. It was at this point that I went to see my GP - he said that he thought it was C.U. - and that he had never told anyone this in August before (why does this never make you feel any better!) and that I should go home and test with an ice cube - I did this and a patch on my arm reacted big time. I now carry anti-histamines and take them if it becomes unbearable - I'm usually prepared when the weather is obviously cold but am caught on the hop with a cool breeze in autumn and spring and summer.
Do you get hives on your face? I have had a few spots on my ears and neck but luckily my face doesn't react.
I live in Cambridgeshire so we are not that far apart - great to hear from you - what is SLL by the way?
I don't actually get hives on my face but my face is very susceptible to the least cold chill. I simply go bright orange and burn like mad, especially down the front of my neck too. All the most tender places burn first, followed by everywhere else no matter how well wrapped I am. I try to stay at home when the temperature drops if I have a choice. Love Wells-next-the-sea by the way, have taken lots of photos of the beach huts there. I love photography.
Keep well. x
Have you been tested for elevated levels of cryoglobulins? My leukemic cells produce an abnormal monoclonal IgG that cryoprecipitates causing cold uticaria and Raynaud's phenomenon. When my leukemic cell count goes up I have symptoms which go away following chemotherapy. Discuss this possibility with your physician.
