Itching: Does anyone have a problem with itchy... - CLL Support

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Itching

dcfrey645
dcfrey645

Does anyone have a problem with itchy arms? Lately this is everytime I take a shower,drives me crazy.

36 Replies
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I did for 30+ years. It was years before my CLL dx. My Dad was itchy too and had CLL. Went to specialists and no one could figure it out. I went to Acupuncture and it took years to go away. It was a slow process. I treated it as a pain after itch creams did not help. Mine was worse at nite. I used ice and Aleve. The pain/ itch would subside then eventually it would return. Then I went to Acupuncture for another reason and told her about my itching. From then on we focused on my arm pain.

I believe it could of had something to do with my CLL but back then I had no signs of the disease. I see so many comments about itching from CLL patients. 💕

dcfrey645
dcfrey645 in reply to GMa27

Thank you.

lankisterguy
lankisterguyVolunteer

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Len

JigFettler
JigFettlerVolunteer in reply to lankisterguy

😮 Gosh! thats a lot. Clearly itching is an issue. The skin is after all our largest organ! Its a remarkable structure.

Aetiology of itching, pruritus, is written about, runs to to volumes.

Clearly on our Forum too!

Jig

Yes, same like me and in different parts in the body

JigFettler
JigFettlerVolunteer

If the itching is just your arms, then it maybe related to an external cause. Early summer sun can do it, itch scratch itch cycle then perpetuates the issue. You need to look for a rash too. Drying skin also itches. Repeated wetting can dry skin, odd to think water as a drying agent. It is. Even I have resorted to Marigolds (gloves) when washing the pans.

If itching is in fact generalised the cause may lie within. That gets complex!

My father always told me, love, is an itch on the heart one can't scratch. 🤔

In any case, can't hurt to avoid using your nails to scratch, dissipate the sensation by just rubbing with just the pads of your fingers, moisturise with a simple moisturiser. If that doesn't sort it, your family Dr would be delighted to help!

Jig

dcfrey645
dcfrey645 in reply to JigFettler

Thanks

Morning,

I can’t see if you are on any treatment ? I started Ibrutinib two years ago and the itching started after I started on Septrin. I have no rash just an itch on my back.

Numerous treatments have been mentioned here. Aveeno anti-itch lotion is popular and I find the calamine it contains helps. My dermatologist prescribed Hydroxyzine Hydrochloride. Not sure it helps the itching but it helps with sleeping.I also take antihistamines.

Colette

PS cool shower

dcfrey645
dcfrey645 in reply to mrsjsmith

thank you.

My Mum has had excessive itching since Apr all over her body. Shes 80 diagnosed CLL in May this year. Low stage no treatment. She had a biopsy recently as the creams she were prescribed were not giving her the relief she needed.

Results from biopsy was dermatitis. She is now taking progesterone tablets. She is seeing some improvement. Looking at upping the dosage. I think her review was this week will check her progress and let you know.

Ill check the cream she was using but it was a real effort for her as she is on her own. The cream treatment involved her using it twice a day. She would shower than apply one layer of cream all over. Then wait 30 mins naked and cold for cream to absorb. Then apply another cream on top. The cream help calm the itching but it was still there and she had to cover up in the sun.

I hope you find the right treatment as i know how distressing the itching was for my mum.

Take care.

dcfrey645
dcfrey645 in reply to scoutsuki

Thanks.

Yes. Have had terrible itching legs, arms abdomen for about a year and half. I am on venetoclax and had rituximab. Had calquence before. My blood work is normal including HGB and reds. Was tested for polycythemia few months ago because I had high HGB and others that indicated poly. with negative results.

Have changed everything and tried everything with no results. Always after a shower. Takes about 20 minutes to go away and it is pretty awful. No rash or skin change. Not dry skin. Tried more lotions, oils, potions and even cooler water. Funny I can go swimming with no itching. I have searched everywhere for an answer and asked all docs...I had radiation for throat cancer a year and half ago and when I went off the pain meds is when it starteds cancer gone and all feels pretty normal. Work physically demanding job every day and otherwise feel normal.

Penkman
Penkman in reply to tpynes

Hi, not related to the original issue but I noticed your treatment is Venetoclax and Rituximab. I am currently on Ibrutininib but it has become ineffective after two years and so following a telephone consultation, my consultant is about to start me on Venetoclax but also mentioned I may be given Rituximab as well. I am seeing him face to face this Tuesday to discuss further after he has the results of a CT scan.

In your case, do you know the circumstances under which rituximab is given in addition to the venetoclax please?

dcfrey645
dcfrey645 in reply to Penkman

Currently on Venetoclax, almost a year. Had eituximab for 6 months previous. Thanks for sharing.

dcfrey645
dcfrey645 in reply to tpynes

Thanks, feel better.

NjArtist4321
NjArtist4321 in reply to tpynes

Water maybe is too hot? Have you tried neutrogena sesame oil UNSCENTED which is only avail on amazon? After lukewarm shower put on still wet skin. You don’t need a lot. Try to hang out in shower stall while oil absorbs. My skin is crazy sensitive after showering. Hurts and stings and itches. I throw on cotton clothes. I wear mine inside out because seams bother me. For some reason if my skin is covered it calms down much much faster. Good luck.

PS stay out of sun. Primary skin cancer is a side effect.

V and R are given because it was found to be successful in producing a time limited treatment prescription. Calquence is also a great alternative to ibrutinib. I did very well on calquence but wanted to try and get off meds one day. So next year they expect I will be able to stop meds and be MRD negative.

dcfrey645
dcfrey645 in reply to tpynes

Good luck.

Hi, yes, drives me mad too.

I’m UK and W&W since July but think I’ve had early CLL symptoms for much longer.

The tops of my lower arms are the worst. Particularly bad after swimming so could be the chlorine drying the skin too much. Absolutely drives me mad sometimes.

I’ve tried loads of creams but the best for me so far is QV available from amazon and chemists.

dcfrey645
dcfrey645 in reply to Ann1412

TY.

Apologies, but there is an error in my reply to you earlier. Some of you may of clicked the mistake.

I said my mum was taking progesterone, well it should say Prednisolone. Shes taking 5 x 5mg daily.

My mum gets confused and realised progesterone is a hormone drug. When she told me this i thought i have this in my hrt meds but didnt question her until today when she said she got the name of the drug wrong.

So, again sorry for the error.

dcfrey645
dcfrey645 in reply to scoutsuki

N.P. thanks.

Hi,

The itching and rashes are so frustrating, I have seen multiple dermatologists for face rash (of course it had to be on my face of all places) and comes and goes in other body areas.

The doctors always give me creams to address it (usually a steroid cream for short term use or pimecrolimus cream which is not a steroid but suppresses the immune reaction in the skin and can be used for longer). I’ve done allergy testing which came back clear. Also did a skin biopsy which found that it was likely a skin reaction related to the CLL. Ultimately, I’ve just had to play trial and error with topical treatments and the things I eat and drink.

I take a daily antihistamine at bedtime (Xyzal or Zyrtec) and Benadryl if I have a bad reaction to something. I’ve noticed that drinking alcohol brings on a worse reaction (usually a bumpy rash on my face). I also need to use specific creams, but the hypoallergenic ones are necessarily the best for me. I use Avene Cold Cream for my body (which is sold online or in specialty chemists/beauty care stores) and they have face creams for hypersensitive skin. They actually have a section on their website for cancer care which highlights the products they recommend for those with cancer.

For me it was just a case of trial and error and making notes about what I ate/used and if I have a reaction over the next couple of days. Good luck with figuring it out-hopefully some of these solutions help.

T.Y.

Good luck.

Does no one think it’s rosacea? Read up on rosacea rash.

I have very sensitive skin. Aveno products bother me.

I use cetaphil products instead.

The foaming cleanser is great - soap is white foam.

The regular pump cleanser is a little harsh - soap is clear liquid.

The pump emollient cleanser is so gentle you can wipe off and not rinse - soap is creamy white liquid.

I don't see the correlation with rosacea which is a skin flushing breakout. I have never heard about it causing pruritis and have only heard it affecting the facial skin like a sunburn.

Hidden
Hidden

I had terrible itching my whole life from eczema. It disappeared when I started Acalabrutinib in February 2015.

CLL Treatment usually helps. New targeted drugs like Imbruvia, Ventoclax,

I was very itchy becuase of high IgE from my CLL. Treatment brought IgE down,

Strong steroid creams help like Triacinolone cream - helped me,

webmd.com/drugs/2/drug-1456...

Be well,

Hoffy

dcfrey645
dcfrey645 in reply to Hoffy

T.Y.

dcfrey645
dcfrey645 in reply to Hoffy

T.Y.

dcfrey645
dcfrey645 in reply to Hoffy

T.Y.

I developed the same if it is skin allergy under hot water a special neurotransmitters are released and you may have crazy sensation. It is usually accompany with redness (flare) on the itching area. I got it under acalabrutinib and sun. Did you?

Best,

Mik

dcfrey645
dcfrey645 in reply to Mik_

No....mostly just after a shower...going for blood work soon. Hope to fiqure it out occasionally. T.Y

Hello dcfrey645

I have had some itching on left arm only. This started after finishing B+R IV. It come and goes, not continuous. I use a Triacinolone steroid cream which seems to help.

dcfrey645
dcfrey645 in reply to Big_Dee

Thank you...It's strang how it's mostly on both my upper arms....I'll give it a try. good luck.

dcfrey645
dcfrey645 in reply to Big_Dee

T.Y.

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