This morning I had what seemed like allergic reaction - except I can't think of any possible cause. I dropped the kids to school, came home, had my usual breakfast and was getting ready to go to work when my face felt really really hot. I looked in the mirror and my head was like a giant tomato, I was puce. I also had blotchy red patches all down my arms, chest and upper back. My GP couldn't see me so I took myself to my local hospital who checked me out and couldn't find any possible cause. They ran bloods and said my lymph count has increased slightly, however I am lucky enough to be able to say it has increased to 11, as this is low I was hoping it's not CLL related. I'm stage 0 watch and wait (though I suppose to I might be bumped up to stage 1 as I'm getting night sweats and have swollen nodes in my neck).
Anyway I've been sent home to find some xirtex with no solutions. They did call my haemotologists team who are running some cytogenetics tests now. I'm due to see the haemotologist on Tuesday anyway.
Has anybody else experienced this kind of thing? I would be very grateful for any advice or anecdotes.
Thanks,
Firefly
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Firefly14
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Hi Jeff, thanks so much that's really helpful. No they gave me nothing. It does sound food related doesn't it? So weird though because I've eaten nothing different to my usual (boring bland v v healthy!) diet recently.
I can only add a personal anecdote with no knowledge of whether it's the same thing but when my levels were about the same as yours, I developed a really angry rash on my neck and chest area which seemed to baffle the doctor. There was some suggestion that it was folliculitis but I'm not convinced about that. Thankfully Sudocrem cream helped me (I can't tolerate the drying effects of calamine).
Stress, anxiety and just being frazzled can cause skin reactions and its interesting your skin felt so hot. Is there a possibility its topical or you're reacted to something? Really it's only a Dermatologist who could tell you for definite if this happens again. They are the guys for this speciality. I wouldn't be worrying too much about a connection with your CLL but it's good they're running tests anyway.
My skin has taken the biggest 'hit' though in terms of irritation I must be honest but I think it's connected with disregulation in my temps as I'm often burning hot with no high temperature registering. As a result my neck gets very itchy and irritated.
Obviously the hospital have ruled out shingles?
It's nasty and embarrassing so I wish you well in finding the cause.
That's really interesting isn't it, that you had a similar sort of thing. I will try sudocreme thanks! Sorry to hear you're getting skin irritation, that's really annoying. If this persists I might just see a dermatologist - good thinking.
The hospital didn't mention shingles specifically but checked me thoroughly so I believe they did rule it out without specifically saying it to me. Having done extensive Google research (I know I know so bad!!) and I kind of knew anyway, having seen shingles before my rash does not look like a shingles rash.
The good news is that it's all but gone now! So odd but maybe I should stop being a hypochondriac now and get on with it!
Thanks so much again, your post was very reassuring.
Hi Firefly. One of the things I have noticed for some time now ( before actual disgnosis) is that I can no longer bath/shower with a lot of things I used to use. I come up in a huge red rash. odd! Peggy
I have been having skin issues: acne, and redness of the face. Went to a dermatologist since my oncologist was not sure how to treat it and the dermatologist diagnosed it as rosacea.
Hi I have also had hot face but without a temperature. I think it's all about the Cll and how it effects different people in different ways. Best wishes
Hi jangreen and thanks, I agree there seem to be lots of different presentations of CLL and a weakened immune system. We're all individuals! (One of my favourite Monty Python quotes).
Don't assume you have a single disease (CLL) causing your skin issues, you could have a combination with a virus, bacteria or fungus contributing to the problem, or it could be an autoimmune reaction.
We have CLL a cancer of the immune system, it allows many diseases to affect us that don't bother most people, but our hard working, intelligent doctors often forget those potential complications. See Dr. Terry Hamblin’s blog on immunodeficiency
Both times my CLL progressed I got a reactivation of a childhood disease that added to my symptoms. Since my diagnosis I have had mild but persistent Psoriasis that flares and decreases at different times of the year. This also makes my skin angry red and eventually uncomfortable unless I treat it with a moisturizer or steroid cream.
Some other postings today mentioned Rosacea and 5ths disease (also called "Slapped Face"), both cause red skin rashes.
So is it CLL and an opportunistic infection or immune reaction?
Most Docs ignore the childhood diseases since many adults have these as dormant, latent viruses controlled by the immune system- we immune-compromised patients see them reactivated. We know about Shingles from Chicken Pox (HHV-3) but the others are difficult to distinguish from CLL symptoms.
And as others have suggested get your Immunoglobulins tested and if needed, get IVIG infusions; many CLLers have had their frequent bacterial infections stopped by that expensive but effective step.
Since you have a weakened immune system, you should be aware that fungal infections can happen. Learning about fungal infections can help you and your doctor recognize them early. This may help prevent serious complications.
Although much progress has been made in the management of opportunistic fungal infections, their diagnosis and treatment remain a challenge.
Huge thanks for this very helpful post, which makes so much sense. I have autoimmune thyroiditis ( CLL was detected through my routine blood tests for thyroid) so perhaps this is another autoimmune reaction, or as you say, I could have picked up something as a result of my weakened immune system. My small boys and their friends probably bring home lots of things which I wouldn't have noticed pre-diagnosis. The IVIG infusions sound interesting, I might mention to my consultant at my check up next week.
I have had the same symptoms for about a month. I think its septrin. Need to wait to see haematologist before sorting it out. Skin doctor advised the cause, eventually.
Have things calmed down with your skin? A couple of years ago, before I was diagnosed, I thought I'd entered a second puberty with rashes and spots. I also went through a patch where it looked like I'd had boiling hot water down my front. And as for my reactions to bites, I'm dying for someone to ask for a photo of my foot after one. Revolting. At the moment, I've nothing too spectacular or entertaining going on Hope you're keeping well.
I have had skin issues ever since diagnosis. Lenkeck makes a good point when he talks about not knowing where the origin of the skin problem comes from. The truth is if you have skin rash and break outs on your skin your body isn't able to fight like it use to to keep your skin clear so you have to be way more careful in your self care. I had to get rid of all the chemicals in my soap, toothpaste and deodorant. It's easy to do. ( For example I had sores in my mouth and when I changed toothpaste they went away and stayed away.) "Kiss MY Face" is a brand that has many of these items but there are many other brands as well. I also have to wear gloves in the garden without fail because if I even go near poison ivy I will get it and I love to garden. Once I changed out these item my skin cleared. I also had the one old mercury filling taken out of my mouth and replaced. Having the mercury filling taken out has changed my life. All of my skin issues have gone away completely and they were severe. CLL effects everyone differently. For you and me it has targeted our skin. You can fight back. I went to many doctors and they could come up with no reason why I had these rashes but these changes worked for me. Also be diligent in going to your dermatologist twice a year to have your skin checked for melanomas. Finding these problems early is the way to keep skin cancer at bay.
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Hope you're keeping well.
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