Severe Itching!!!!!

[deanna2289]

Has anyone had severe itching and it gets worse with warm or hot water when washing your hands?? It itches soooo bad I can't stand it!!

If so what did you do for it?

[deanna2289]

I so clarify the itching is all over my body! It is sooo uncomfortable. I am supposed to see my doctor this week to decide what to do.

[PaulaS Volunteer in reply to deanna2289]

Hi Deanna,

Sorry to hear about the itching... I know it can be SOOO horrible... I should see your doctor asap.

Any idea what is causing it? Have you started some new medication recently? Some meds can trigger itching... And for some people, certain foods... Or soaps... Or infections... Or other things...

Till you get to your doctor, I would suggest you use the plainest of soap (and as little soap as possible). And wash in cool water...

Hope it gets sorted soon,

Paula

[Hidden]

Deanna2289

Do you have any contact with old folks homes or deal with donated used goods. If so I strongly advise making your appointment into an urgent one, as it sounds to me just like something I once had that started as just an itchy bit but turned into full body scabies. For sure that gets worse when you are warm, especially at night. No it is not a dirty folk disease the dam things just love nice clean bodies.

I do hope I am wrong but need you to be aware and not delay getting treatment if it is.

All the very best

Bubnjay

[jangreen]

Hi I don't seem to have any reason for the itching but it comes and goes. Calamine lotion seems to help a lot.

[rosepainter]

Are you using soap with Triclosan in it? My mother suffered from this for 20 years and was given all kinds of lotions and meds by her MD. her hands even developed cracks that bled. Then I got it and it took me about a year by the process of elimination to figure out the cause. You may be surprised to learn they are putting Triclosan in icings and other foods now as a preservative. I avoid it as it causes my mouth to itch.... besides, I don't want to expose myself to such chemicals.

[Janetfld]

Yes I have. I have been treated for my CLL with Cytoxin/Rituxan and twice with Rituxan/Trenada. The itching and reaction to a simple mesquoite is terrible. Very painful. By trial and error here is what I found helps. Never take a bath or shower in hot water. Use lukewarm to cool. Use the Aveno anti itch products in your bath and on your skin. Lower the temperature in your house and try to avoid getting hot. If you go outside cover yourself completely with clothes or DEET because a bug bite will cause you sever pain for two weeks. It you are itching all over your arms or legs and you cannot see anything rub the area all over with ice. Get a prescription of the strongest anti itch cream your doctor will give you. Use only in emergencies because you cannot use it for more than ten days and be very careful never to get near your eyes. Try not to touch your skin. Take a antihistamine daily. Just about the time I get back to normal, I have to enter treatment again. Good luck

[deanna2289]

thank you everyone, I haven't heard back for my appointment date yet. I have been dealing with this for awhile and it is becoming unbearable. I was up most of the night with my feet itching like crazy.

I have scars from bug bites all over and it is embarrassing.

My husband and I have made a decision if my oncologist cannot figure this out I am going to the Mayo to see if they can help me. My oncologist seems to think it is my immune system over reacting because of the CLL. He said this is a B symptom that is documented..........well then with modern technology "FIX IT"!!

Sorry if I am venting but I cannot stand it anymore. I am 40 years old and the scars on just my forearms alone look like I am an addict of some sort. The itching is all over and soo bad even my eyelids itch!!!

I will have to try some of these home remedies and see if they will relieve me from my misery.

[Raerita in reply to deanna2289]

I too have CLL and my oncologists prescribed neurotin which helps a lo. I know this can drive you insane, or maybe plain over the counter benadryl might help Hope you get some relief soon.

[splashsplash]

CLL definitely brings me severe reactions to insect bites. I take an antihistamine for the reaction and if I take it early enough it seems to work. My skin also reacts to all perfume and I use non perfume soap and shampoo. Let us know if you find something that works.

[wroxham-gb]

Dear Deanna and Janetfld

So hope you're both feeling better. Like others here I too suffer but not as bad. Keep everything simple. no perfume no hot water and of course antihistamine should help. Good luck with the doctor.

Sue

[stunned]

Since being dx with CLL, i have had severe reaction to nettles stings, where my hand swelled up so much i couldn't bend my fingers. I now carry antihistamine with me all the time and especially when i go walking in this beautiful country of ours.

I also get itchy forearms and shins that i have scratched till i have fetched blood. ice packs to cool the skin and antihistamine worked for me.

I also have pure cotton bed linen and try not to wear synthetic material if at all possible.

As stated above non perfumed soap powder and shower gel and hand wash.

Ask your gp about itch relief creams for when it gets really bad.

best wishes,

[Hidden]

Deanna

Did you manage to find something to help with the itching as it may help others on here ?

Hope you are much better.

Best wishes

Bub

[Paddy190]

Unfortunately I have cll the itching on my upper arms is driving me crazy,no sleep please help if you can. Angela

[sunshine35 in reply to Paddy190]

I do too ! Mostly my back and arms, no rash just itching. My oncologist said

he has not heard of itching as a CLL issue.... BJ

[PaulaS Volunteer in reply to Paddy190]

Hi Paddy/Angela and Sunshine/Bj,

There are many reasons for Itching and it may not be a CLL issue, but skin sensitivity and allergic reactions can get worse with CLL. And these can cause itching. I found myself reacting to soap - even the simplest of soaps. Certain areas of my body are more sensitive than others, and it helps me to use just plain water to wash those areas. And where I do use soap, I rinse VERY thoroughly. It also helps if I don't have the water too hot.

If your skin is very dry, this can cause itching and some simple emolient creams like Diprobase can help.

Certain drugs can cause skin sensitivity and itching... Have you started any new medications recently? Or sometimes sensitivity can develop after being on a drug for some time.

I hope you find a solution... as I know what it's like to be kept awake with itching that made me want to scratch and scratch...

best wishes,

Paula

[Annemarietort123 in reply to Paddy190]

You may have brachioradial pruritus. It is treated with gabapentin. I nearly went insane until I started on this drug. The itch is actually pain from a damaged nerve root somewhere in the spine near your neck. The itch is confined to your arms and sometimes will spread across your upper back. As far as I know, this is not related to my CLL.

[hutampico]

Hi!..... I have had pretty severe itching at times at night when going to bed (particularly on the legs for around 5-6 years, and attributed theis to my psoriasis ("moderate" elbows, and knees primarily), and/or varicose veins that I have on my left leg, but since my diagnosis almost a year ago (0-1 stage cll), I figure it is related to this, as my annual Merchant Marine physicals' bloodwork started giving telltale signs as early as 2010 with slightly raised leukocyte counts at times, and absolute lymphocytes 4500 to 5500 stable. I take 1-2 benadryls at night for both the potential itching, AND to help me sleep. I also take an Ashwagandha, and Rhodiola Rosea capsule to stabilize cortisone levels for calming, as well as Rhodiola being VERY effective to induce drowsiness. In the daytime I pop a Claritin type pill (180-200 pills on Ebay/MUCH cheaper source...(!).....)