Has anyone experienced rashes on upper back, chest, abdomen and legs and seen a dermatologist about it? Husband has had this ongoing for over 3 months now. First time we visited urgent care and they gave him a methylprednisolone pack and it helped a bit but still came back. We had a dermatology consult about another issue and on the phone consult he recommended fluocinonide cream and follow with Cerave Anti Itch cream but it is literally all over his body. It briefly went away when he was hospitalized for influenza and pneumonia where they gave him a lot of steroids, antibiotics and antivirals but it is now back with a vengeance again. His CLL is still in remission. Changed to Tide sensitive pods, washes with Aveeno body wash, and uses Calamine with Pramoxine and still itching. I feel so bad for him. Some are tiny small red raised dots on the back and others are more flat and wide like hives. Any insight would be appreciated. Also I had him try taking Claritin yesterday but so far not much difference if any. Thank you all.
Ongoing rash with extreme itching for 3 months - CLL Support
Ongoing rash with extreme itching for 3 months
Benadryl daily and look up an anti inflammatory diet
Wow this is tough, since it went away in hospital one wonders about an environmental irritant. What other chemicals are used? Fabric softener, Febreze, cleaning chemicals, mildew, pollen, all may cause generalized skin reaction.
Is he on any meds At All that can possibly cause sun sensitivity? I once took ampicillin but didn't avoid the sun, & got a rash all over my torso. Bactrim DS is a known sensitizer, is he taking that perhaps?
Palmetto, Anytime I have a reaction like that (and I've had a few in my life) I've traced it down to some laundry detergent issue/formula change. I stay away from Tide (I seem most sensitive to it) and all pods regardless of brand. We now use Arm&Hammer sensitive skin liquid and I've had no issues.
Bigfoot
I changed the pods to the Tide Free and Gentle so maybe will go back to the cheap stuff I used to use liquid Purex or your Arm and Hammer sensitive skin liquid. That possibly is when the change happened. Nothing else changed.So you say all pods caused it? I wonder if it is the formulation. I am going to change that right away. Also we have been keeping the house tem pretty high over the summer usually staying around 77 to 78 degrees. No new meds except eye drops. He is only taking BP meds and levothyroxine so nothing new there. Thanks for al the advice everyone.
Not sure if it's all pods, but I had a rash with at least 2 different pods and when we switched back to simple liquid the rash disappeared.
The thing about pods, is they generally contain a lot more detergent than one needs. So even if "free & gentle", any residue may cause an irritation.
I use about half the recommended amount of All Free & Clear liquid, and I always do an "extra rinse" cycle. If hubby's workout clothes, or sweaty workout socks, don't smell clean/smell musty after drying, I'll use a little more detergent, or if things are muddy/really dirty. IDK what your water is like, but even with our whole house, non salt water filter/softener, I need to use warm water. Cold just doesn't seem to do it, The main washer is front loading so water automatically adjusts; the bottom pedestal washer is a top loader & I don't fill it more than half full. Even working out, we aren't manual laborers, or dealing with young kids (who generally are very messy lolol) so clothes don't get really sweaty or dirty.
I also remember I had to dry things significantly longer with that humidity. Not higher dryer temp, just, really long dryer times. I don't use the "cycles", I used the timers and unless a load is really small, I ran it at least 2 hours. Longer time on lower heat worked better than frying fabrics on higher.
I also clean the washer intermittently.
My husband really suffered with this, fully covered in a red itchy rash it was driving him crazy. Managed to see a dermatologist who diagnosed Hives/Uticara and he now takes daily antihistimes, up to 3 per day if necessary and if they do not work then he has another one. I made sure that bedding was natural fibres, changed detergent, threw out all of his underwear and bought new, everything that I could think of I changed. I looked about the home and bathroom, made changes and providing he takes his antihistimes he is fine, if he stops then it returns!
So sorry he suffers. It must be awful. I really hope I can find the cause.
Do you have a hygrometer to check for the humidity? And whole house or numerous air cleaners? I ask because when I moved to New York, and then Florida, I had a lot of problems when the humidity got higher and from the pollens. I ran dehumidifiers and air cleaners, and stopped having sinus infections.
My FIL in New Mexico reacts to pinon pollen, he had awful skin rashes several times a year. He now leaves the windows closed during high pollen counts, and we have room air filters throughout the house.
I take a non sedating antihistamine in the AM and diphenhydramine at night. I use Zyrtec/cetrizine, it's more effective against molds than Claritin/loratidine.
Hello Palmetto. So sorry to hear that this is going on with your husband. I suffered from chronic hives/urticaria, and it coincided with diagnosis of CLL. My immune system became hyper -allergic to histamines including alcohol. I must take daily antihistamines (Hydroxyzine) and follow a low histamine diet. I cannot drink any sort of alcohol, or risk suffering from full body hives. Good luck 🍀
I have a similar rash, but I also have a rash which looks like psoriasis. My whole body is a mix of patches like psoriasis and itchy little bumps like your husband has. I’ve seen two dermatologists. Neither was able to come up with a positive diagnosis, but they both agreed I should use betamethasone cream, which is a bit stronger than fluocinonide. I also use Versace. I also had a cortisone shot to help tamp down the inflation. My rash cleared about 90% after the cortisone, but it s creeping back.
My oncologist thinks it could be related to the ibrutinib which I had been on for five years. The toxicities build up and act as a trigger for the rash. She switched me to zanubrutinib which is supposed to have fewer side effects.,,The rash is still there, but only about 30% of what I had at the worst. I still itch, but not as intensely as I did before. It gets better then worse.
Both dermatologists told me if I took a Claritin or similar antihistamine every day, it would probably help, but I have such a bad case of dry mouth that I rarely take antihistamines. One reference I read about ibrutinib and itching said to find a hobby you love and immerse yourself in it so you don’t think about the itching!!! Easier said than done!
I hope you are able to find something that helps.
Diana
I had it and it was brought on by prednisone. It lasted 4 mths and is fine now. Look up red skin syndrome.
I occasionally get a flare-up which GP-prescribed cream helps. But three days ago I had a flare-up back of leg which was driving me mad. My wife reminded me this had happened before years ago which we eventually put down to newly dry-cleaned trousers (even went to the laundry to get a full breakdown of chemicals used). Blow me! Three days ago, wore a pair of new factory-fresh trousers. Connection or coincidence? Dunno, but said new troosies are in the washing machine as we speak, so we'll see next week.
Just a thought. Sometimes the simplest things...
Thank you all. I will make all of the changes and see. He has only been treated with O and V so no ibrutinib and has had no treatment now for 3 years. Blood work is normal. The prednisone helped but I don’t want him on it indefinitely. Sorry for those of you who also suffer with it. Will keep doing the research.
I have hive like rashes that come and go in small patches, very itchy. Currently I have 3 such patches. They seem ro reappear in the same areas. I use an over the counter, Cortisol-10, and a prescribed cream which is stronger. Frequent use of these steroidal creams can cause the skin to thicken, but when I itch badly I use them. Rolled oats can be used as a natural way to treat itching. It may be messy but I have made oatmeal and smeared the gel from the sides of the pan on my skin (I just did this on a nasty patch and it feels wonderful). For large areas pit the uncooked rolled oats in a sock and put it in a bath. The gel will come out of the sock and you can gently rub the sock on your skin. It is very soothing, but doesn't necessarily last as long as drugs.
I've been hoping there would be some discussion about rashes but what I'm not seeing is whether people think the propensity to rashes has anything to do with CLL, the disease itself. I did some googling and could find no correlations.
I had an itchy rash suddenly appear all over my trunk moving to upper arms about a month ago. Being a Saturday I went to the ER where they gave me 4 drugs parenterally and kept me for awhile. Sent me home with a steroid an anti-inflammatory and Benadryl. I could not identify a reason as I've been off ibuternib for 2 years and could think of nothing in my daily life that has changed. After I went home I remembered that I had been on amoxicillin the week before, My brain must have bee very fuzzy but I'd been off it for 4 days. Apparently amoxicillin can have a delayed reaction. I am scheduled for an allergy test in a couple of weeks as I don't want to be classed as allergic to penicillins if I'm not really. The rash did clear within several days.
Now again a week ago I developed a dark red patchy rash on my lower legs moving after a few days to my arms. I had a televisit with an allergist who based on my history of nothing changing in my life, and the fact that this rash is not itching, did not think it was an allergy. He recommended a dermatologist. I couldn't get in to my dermatologist until this coming Wednesday, which will be 10 days after its first appearance and it hasn't abated. In fact it is gradually moving up my arms and down to my hands and feet. Because it isn't particularly itchy I am waiting it out and not asking my Primary for steroids because I want the dermatologist to see the full rash in all its ugliness. There are so many things it could be. Also, steroids are immune suppressants and I am already immune suppressed enough!
That’s why I posted here. I do think possibly it is that his body can’t tolerate what a person with a good immune system can. We are going to take all the advice and see if the detergent is the culprit I really hope it is because that would be best scenario.
Am sorry for what your husband is going through. I have had something similar in the last 2 yrs, on and off. It zeroed to: 1. Exposure to sun
2. Exposure to heat
3. Dry air
4. Scented bath soaps and detergents.
5. Stress
CLL weakens your immune system and as such these reactions can occur.
Let him keep his life simple and find the triggers and avoid them.
Sometimes more chemicals make it worse and leave you with pigmentation.
And no matter how tempting, don't scratch. It makes it worse.
CLL with CNS involvement 
High Altitude and CLL: Risk?
