For almost 1 1/2 months now I have passed sleepless day and night because of absolutely severe itching and scratching. I visited one private doctor, one district public hospital doctor, my CLL doctors and a dermatologist working in the same hospital I am attending for CLL. The dermatologist recommended anti scabies drug to which the itching did't respond. But other doctors prescribed anti allergic drugs cetirizine and loratidine which also did't have any effect on itching. As i am scratching the big patches raise which then get red. The itching of the spots continue for about a week and then changed into small itching black dots which now seem to be changing appearance of my skin. Itching is covering my whole body including legs and hands except the parts i mentioned above. Anyone who experienced this phenomenun or any advice from anybody reading this post, your response is highly in need and appreciated. Thank you all.
amaagabg2020
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amaagabg2020
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Hi, I am so sorry you are itching like this. In the uk our general practitioner would have treatments before referal to a local hospital. Have you tried steroid creams? I have looked at your previous posts and wondered if you are taking supplements to your diet. You mentioned turmeric. It is worth trying a simple diet and stopping any extra vitamins etc.
Have you changed shower gel or anything you put on your skin? If you cant find unperfumed washes it might help using baby products.
There may be a reason for this but keeping diet and topical skincare simple may help, Anne uk
Hi, Anne! I am very grareful for your informative post to my question. I never used steroid creams and also never took supplements in my diet. I once used turmeric and green tea for reducing size of nodes but immediately stopped them because it did'nt work. For body washing i always use unperfumed soad used for washing clothes. As a matter of experience, i don't apply any cream, lotion or oil on my body and hair. May be dryness of skin is one of the reasons that exacerbates my skin condition. I was scheduled for today to see dermatologist working in this Black Lion Hospital in Addis, the only referral hospital for leukema cases in Ethiopia. The dermatologist recommended LEVOCITRIZINE 5mg tablet for two weeks and liquid parafin to apply on the body. I hope it will give me some relief from this nonstop itching. I promise i will update you all on the outcome.
Don't use laundry soap to wash your body! You probably are stripping too many oils from it, not to mention changing the skin pH drastically. You probably will need some mild moisturizer or natural oil to repair your skin barrier function. This would be less toxic than liquid paraffin, which is something more of a "last resort" IMO. If you haven't told your docs you are washing your body with laundry soap, they won't know you have been stripping your skin. Nilotica shea butter/oil is great as an oil after bath/shower, as is coconut. These won't go rancid and won't attract insects, which I always take into consideration since small amounts get onto clothing & sheets. You can apply it several times a day. Oils/moisturizers will also help counteract dryness which in itself can cause itching. But you probably damaged your skin using laundry soap. Make sure you tell your doctors about this.
Here's a link discussing skin problems from just having laundry soap on clothes. Putting it on your skin.....exacerbates the problems:
Section 3 from the Mayo Clinic post talks about "not using strong soaps on skin". Laundry detergents, even perfume & dye free, are considered strong soaps:
And switch to bastille or other mild soap. I get an Australian product online, Miessence Sunflower Body Wash and love it. But there may be lye free, local options where you live.
Your post is really a great help to me to have consutation with my doctors. All perfumed body soaps sold in local stores including those by pharmacists are allergic to my body. All laundary soaps all perfumed and unperfumed except few unperfumed types are allergic to my skin. You have remined me of the crucial issue i should find solution to sooner rather than later. Thanks, Sofia.
amaagabg2020, I suffered from symptoms like yours for weeks before discovering that I had developed severe food allergies post chemo therapy. Please take a look at my post from four years ago.
Thanks gardening-girl. I read the information in your post 4yrs ago and it is very informative. I will try my best to see allergy doctor, if there is any in the area, to identify any food that is naturally allergic to me.
amaagabg2020, it would be helpful if you could see an allergy specialist, but you don't have to wait. You can go on an elimination diet. I was so desperate that for a week I ate only applesauce and pears, two of the least allergenic foods. Within a week my symptoms cleared up. Then I started adding back foods waiting 3 or 4 days before adding a new food to my diet. I discovered that I had become allergic to dairy, eggs, wheat & legumes. As long as I strictly avoided these foods I was free of symptoms. The food allergies disappear when I am on treatment for CLL and reappear post treatment as my B cells recover. My latest allergy was to oats, but that disappeared once I started treatment with ibrutinib back in 2015. Now I can eat all of the granola and oatmeal cookies, as well as any other food that I want! Please consider an elimination diet to see if it helps.
Sorry to hear about your itching and scratching. I had similar symptoms as yours a few years ago. I was itching almost none stop night and day. I had scares all over my body except my face. I was seeing a dermatologist, allergist and all kinds of doctors. The steroids would help for a while and then it would come back. I took Dapsone, Doxycycline, Prednisone, Benadryl and all kind of steroid creams like Triamcinolone and nothing worked. My dermatologist diagnosed me for Urticaria Vasculitis.
My labs ruled out Kidney disease as the cause.
My Allergist put me on high doses of Doxepin that did help get me through the nights. I had to stop the Dapsone because of bad side effects.
I saw a Specialist who felt it was related to CLL and recommended treatment when my labs started doubling.
My gp gave me a mild steroid cream and a menthol cream.. They were very effective thank goodness and I wash with E45 not soap or detergent based product at all
Very kind of you to share this important information with us. I will consult wth my GP regarding what sort of soaps or creams i should use for my skin.
I am sorry for not responding to your important second post in which you advised me about using cold ice pad. I am 100% sure it will help. Because i observed that when my body gets a little warm, the itching gets worse and subsided wnen the body gets cold. Surely i will make use of this method.
I experienced similar symptoms as a reaction to Septrin, taken during chemotherapy. This lasted two years, and has only recently declined. I used topical creams and a soap substitute to reduce the effects. I hope you overcome this soon.
As I once had scabies and the itching was so so bad I feel really sorry you are having to deal with whatever your itching is. I would have suspected you had scabies as your head remains ok while the itching ravages your body. That is typical scabies. I found that being warm exacerbates the itching and being cold eases it.
I could not sleep so had a cold shower and laid au natural to get some sleep.
However I can’t believe someone would not have diagnosed it if that is the reason for your itching.
By the way no drug treatment for scabies I am aware of, only cream applied top to toe overnight to kill the mites which live in the skin.
Actually the doctors here are not in agreement as to what caused this severe itching i am experiencing. Today i visited senior dermatologist and he told me this problem is squarely blamed on CLL and prescribed LEVOCITRIZINE 5mg and liquid parafin to apply on my body saying the disease is not scabies. But the previous doctor i visited on my first appointment recommended anti scabies drug. So now let's wait and see what the outcome of this prescription would be.
amaagabg2020—-I feel your itch! I have had nearly the same thing, in a lesser degree the past few months! I have been on Acalbrutinib Clinical Trial for a year and it is wonderful for the CLL. However, they gave me Allopurinol daily to help avoid having gout. About 6 months ago I started getting patches of rash and areas of extreme itching? My Hematologist suggested that I check it out with my Dermatologist. When I did, she thought it might be eczema and did a biopsy and some tests which ruled out Leukemia Cutis or CLL involvement. She prescribed Triamcinolone Acetonide Cream 0.1%. This helped a lot, but itching persisted in spite of it? I stopped taking Allopurinol as a test, and immediately got relief! She then prescribed hydrOXYzine HCL 25 mg tabs to take at bedtime if it was causing trouble with my sleep! I’ve only had to take one in three weeks and have only used the cream a couple of times! I suggest you research all the meds you take, RX or OTC, to rule out side effects as being a root cause! I will only take Gout meds if I get Gout!! Good Luck and God Bless! 🙏🙏🙏🙏🙏🙏
Very exciting explanation that is inspiring to find solutions to my problems and that of other members of our CLL social group for health. God bless and stay safe and healthy.
Yes I have it too. It started on my scalp and went to my chest. My GP prescribed Prednisone 5mg which seemed to help. But I am now down to 1mg and it isn't doing anything. My demotogoist prescibedTrimcinoione cream and hydroxyzine HCL 25 mg tabs. I took 2 tabs of the HCL at night which let me sleep. The itch is now mostly on my back. Cold showers help at night. Get in the shower without warming the water for a minute. It is a shock to your system and it helps. But it isn't long lasting. Now I have medical cannabis persciption. I take a 10 mg gummie right before bedtime and sleep like a baby. I believe the body warms up with the covers at night and it causes the itching reaction. My medical oncologist recently perscribed Cyproheptadine 4MG twice a day. I haven't noticed a change. The itching is a common cancer symptom and hopefully yours and mine will go away soon. Good Luck!
You are really right. When i get warm, itching increases; but when cold, itching decreases. Best experience. I will apply this cold ice pad on severly itching area. Thanks.
Very educative first hand experience that would help out me and others with similar conditions to find appropriate solution to our problems from different sources and direction. It is encouraging post.
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