Itchy Skin

[Grembold]

For some time now my skin has been terribly itchy, especially at night when I am trying to get to sleep. Is this CLL related. I was first diagnosed with CLL in December 2009 and have had three lots of treatment; the last being an overdosing Ibrutinib which caused itchy hives all over me back.

[mrsjsmith]

Sadly I believe it may be and also down to some medications.Mine started when I began Ibrutinib and co-trimoxazole was supposed to be the culprit. I still get itching on my back, but no rash even though co-trimoxazole has been stopped. My dermatologist prescribed Hydroxyzine hydrochloride which helps.

Colette

[Grembold in reply to mrsjsmith]

Thank you for your quick reply, I will look into your dermatologists solution.

[mrsjsmith in reply to Grembold]

No problem.I know it’s not a ‘ life and death ‘ issue but it can be irritating. The good thing about Hydroxyzine hydrochloride is a side effect is it helps me sleep.

Colette

[Grembold]

This is always a possibility; although the Haematologist told me that I would not be getting any more treatment as I have already had too much, this after I had presented with my back covered in itchy hives.

[Salohcin]

Hi GremboldI have recently finished FCR and since then have suffered from itchy skin on my back and the tops of my arms although I have no rash etc. This is always in the evening and when trying to drop off to sleep. It does now seem to be gradually easing so I’m hoping that this is because the drugs are gradually leaving my body and it’s returning to normal, whatever that is after chemo. Having read the post from mrsjsmith above I wonder if it is the co-trimoxazole which I am still taking for the next few months.

David

[mrsjsmith in reply to Salohcin]

David I was told by my pharmacist that there are alternatives to co-trimoxazole so it might be worth checking. Your symptoms sound the same no rash just the itching.

Colette

[Salohcin in reply to mrsjsmith]

Thanks Colette I will give them a call. As you says it’s not life threatening just frustrating and sometimes find myself like Balloo the Bear in Jungle Book with those bear necessities 😂

[mrsjsmith]

I know the feeling 😽

[Wiganmc in reply to mrsjsmith]

This does raise its ugly sides frequently I still suffer post FCR 10 months still Balloo good luck

[Agfar]

Just a thought but have you changed your washing powder to biological from non biological. I know I itch if biological powder is used to wash sheets in particular.

[Salohcin in reply to Agfar]

apparently we are non bio but thanks for the thought

[Grembold]

I do not use washing powder, I use one of those ball things.

[Someca]

Hydrocortisone cream does offer some relief for me!

[noeagaman]

I was getting very bad itching in the evening when trying to go to sleep as well. I talked to my allergist about it and he said to try taking Zertec twice a day as apposed to once a day. This has helped me immensely. That may be worth a try for you.

Chris

[Fran57]

My husband had FCR in 2015 and suffered dreadfully with itchy skin, along with a crazy, angry rash all over his body.He has been told by his haematologist that it was probably the co-trimoxazole.

He continued to have sudden itchy rashes appear

( seemed sometimes to be a change in temperature??…) mostly on arms and legs… but recently ( 🤞🏻and we don’t say this out loud) since starting Venetoclax and Rituximab this appears to have stopped….🤔

Hope you manage to sort it, it can be pretty miserable.

Stay safe,

Fran 😷

[Ashwas]

I am diagnosed CLL in 2003 and on wait and watch. However, I had treatment recently for adenocarcenoma with radiation and chemotherapy in 2017. Now under observation.Recently, facing frequent itches in back, chest and legs. Initially, looks like a ant bite and later changes reddish.

During my last visit, my oncologist specifically asked me whether I have any itching sensation. It was not serious then.

Since, he had asked specifically and also since my WBC is rising, I feel itching may be related to CLL.

I will be seeing him next month.

[Kiwidi]

I am treatment naive and have been on W&W for around 3 years. I also get itchy areas on my skin- especially on my upper arms and back. I believe they are CLL related. I use a natural peony based cream and that seems to ease it.