They won’t go away!

[Cfarrar]

I broke out 6 weeks ago with itchy sores all over my body. I even got one on my tongue! I’ve tried steroids and after 10 days that helped but as soon as I got off the steroids they came back. The allergist wants to start me on a stronger steroid but I’m worried about that. Should I be? Anyone run into this in the CLL journey? I have 4 nurses, my GP, two dermatologist and and an allergist stumped. All they could determine is that it’s some kind of internal allergic reaction. Thank you for any help you might be able to give.

[NixRose]

I had hives like that - bizarrely was a reaction to thrush oral tablets. Neither my very experienced Gynaecologist nor Dermatologist had seen it before. I had used the medication previously, as needed, on and off without a problem. If I were you I would, if at all possible, eliminate medication one by one and reintroduced to determine the culprit. Good luck and hope I was able to help - it was a nasty experience- had it happen twice before I worked it out.

[Cfarrar in reply to NixRose]

Thank you!

[blowinginthewind in reply to Cfarrar]

I was going to say the same thing - could you be allergic to the oral steroids - don't stop without talking to the doctor though. When my daughter was 13 she had an awful rash on her foot, mostly between her toes. They gave her all sorts of cream and they didnt work, and it got worse and worse. Within a few weeks she couldn't walk on the foot because the skin split and made her foot bleed. At which point Gp basically said 'get her to dermatologist today". We went to see him, and he looked at the foot and all creams she had been prescribed over the past weeks. And he gave her an ointment with the same drug. It was gone within 48 hours. She had been allergic to something in the actual cream. follow up allergy tests showed that she is allergic to something which is in all creams.

[lankisterguy Volunteer]

Hi Cfarrar,

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Patient Power just pubished a video that might be of interest.

patientpower.info/four-thin...

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My favorite quote from the above: “One of the hallmarks of the disease (CLL) is that the immune system doesn’t work the way it’s supposed to,” she said. “For the most part, this is going to be immunosuppression, so making people predisposed to skin cancers, infections, and other conditions that prey on an immune system that’s not functioning appropriately. On the other hand, we also see autoimmune conditions in CLL where the body actually starts attacking its own components. So too much of an immune system that is not performing the way it’s supposed to, or too little immune system, can both lead to skin conditions.”

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Len

[WinJ3]

Mine was a nightmare! I had an ongoing battle with rashes and itching. My Dermatologist and Allergist couldn’t find the cause. They had me on all the highest doses of steroids, even Dapsone.

A CLL Specialist said it was likely related to CLL. He was probably right, because the skin problems didn’t go away until I was treated for CLL.

Win

[Cfarrar in reply to WinJ3]

So as soon as you started treatment they went away?

[WinJ3 in reply to Cfarrar]

About a couple of weeks when I stopped using all the steroid creams and lotions.

[SofiaDeo]

Until you can figure something else out, try some kukui nut oil. It helps with inflammatory skin conditions and won't affect your body like steroids will. Maybe double check the amount of sugar/white flour/omega 6 & saturated fats you are eating? Cutting your inflammation overall may help a tiny bit. I mention this, as someone who had normal cholesterol/lipid levels for decades, then after getting CLL those parameters started to go haywire. It wasn't until I cut my (not very high) amount of saturated fat I was eating and lost some weight, did it normalize. You have had some crazy health challenges and something is now causing skin welts/inflammation. And the stress of the past year has just made it worse, possibly to the point where a diet you normally could do just fine on, needs to be tweaked a bit because of excessive stressors.

I am sure you already thought of this, but....maybe you need to use a Free & Clear type of laundry detergent, do an extra rinse cycle, and make sure zero fabric softeners are used. And no Febreze on couches, car seats, etc....if so, clean them. Coating smells with chemicals that can get built up over time can likely cause a reaction after "too much" is used.

[Cfarrar in reply to SofiaDeo]

Thank you SofiaDeo! I have been on a health kick ever since my breast cancer but have times when I get depressed and just get off course. I was told it’s an internal reaction because I was getting sores on my tongue. I just feel like it’s always something with me. It’s exhausting always having something wrong with you.

[LeoPa in reply to SofiaDeo]

I'm with you on the coconut oil recommendation. Pure extra virgin coconut oil, edible variety. Plus the WTF diet. Whole traditional food 😉 . Avoiding all processed foods as well as everything sweet for a few weeks. If this allergy is food related, that should help.

[Cfarrar in reply to LeoPa]

Thank you, I’ll give it a try!

[Bridgewood]

Hi CfarrarI sympathize with you as I have sores all over my hands. Have been on Ibrutinib for over a year and it has brought my numbers to where they should be. I feel great, no other side effects but skin eruptions are one of the side effects of Ibrutinib. I did have a sore on my shoulder and had a biopsy that proved negative, so am reluctant to have biopsies every time. My Dr. prescribed antibiotic cream 3x daily and my hands are covered in bandaids.

[Cfarrar in reply to Bridgewood]

Oh goodness, my doctor told me it’s hives. They prescribed a steroid cream which really didn’t do much. Now I’m sitting here itchy and wondering what in the world is causing this and so frustrated. I’m in W&W and only diagnosed less than 6 mos ago. Glad to hear your doing well otherwise, thank you for your message!

[thinki]

Could it be a gluten allergy? For a friend of mine, it turned out that was her culprit.

[Cfarrar in reply to thinki]

Good when I’ve never had a problem with gluten but it’s worth a check with my allergist.

[Kurrajong]

I had a rash that slowly spread over most of my body for about a year before I was diagnosed with CLL. I thought it could be gluten as I’m Coeliac but on a strict gluten free diet. No doctor could figure it out. No cream worked. Only a couple of months after diagnosis I started treatment V + O. Within about two weeks of starting the O infusions, the rash disappeared and hasn’t returned. I’m 9 months into the one year treatment now and all is going well and I have been in remission for a few months now. But I do get eczema breakouts in small spots, fungal breakouts and itchy scalp too (fungal) and I’m about to have a sun spot removed from my face. So skin conditions seem to be an ongoing issue for me. Hope this helps. Cheers, Colleen

[Cfarrar in reply to Kurrajong]

Thank you Colleen! Great to hear you are doing so well!