Itchy itchy — looking for solutions

[Marimbagirl]

Hello, I am new to this site, which was recommended by a friend. Currently I am interested in solution for relentless itching that I have been experiencing for a month or so. Currently taking an antihistamine (Cetirizine) daily and using a hydrocortisone cream, without much effect. Would love to hear any suggestions for management, as it is driving me bonkers!

[lankisterguy Volunteer]

Hi Marimbagirl,-

We have many past discussions on itchy skin - some from untreated CLL patients and others while in treatment.

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Here is a posting from 8 days ago: healthunlocked.com/cllsuppo...

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You can also find past discussions in the box on this page labeled: Related Posts

*cll related itching solutions healthunlocked.com/cllsuppo...

*Very Itchy healthunlocked.com/cllsuppo...

*Itchy skin healthunlocked.com/cllsuppo...

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And here is the list of 215 times itchy skin was mentioned in past posts:

healthunlocked.com/cllsuppo...

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Len

[Marimbagirl in reply to lankisterguy]

Thank you so much — I was pretty sure there would be a good store of discussion on this site. I will check this out.

[mrsjsmith in reply to Marimbagirl]

Also might be worth getting a referral to a dermatologist.

Colette

[Marimbagirl in reply to mrsjsmith]

Thanks, I will look into that if this doesn't subside before my next appointment

[mrsjsmith in reply to Marimbagirl]

My hospital has a specific dermatologist that they refer patients to. Skin problems are fairly common sadly with CLL

[cllady01 Former Volunteer]

Marimbagirl, is the lymphoma diagnosis you have CLL? There may be many differences in what can help you depending on the specific lymphoma you have. Of course, the underlying reason for the itching may not be the lymphoma at all.

[Marimbagirl]

No, I just came to this site because a friend with CLL said I still might find useful information — I have B cell follicular lymphoma. Apparently itch is not uncommon with this, but you’re right, I still need to go and see my medical person to determine the cause. No appointment until Oct 1, so I was hunting desperately for remedies I could try. Thanks for your response.

[Veneto]

Some years ago, pre-CLL, I was on cetirizine and it caused hives. Could you maybe try a different antihistamine?

[Marimbagirl in reply to Veneto]

That might well be a good idea. It is certainly not improving on this regimen, possibly even worsening. Thanks.

[ViPOR]

I have a history of Follicular NHL of the past 10 years. Treated with chemos, and 3 clinical trials (Ibrutinib, CAR T and lastly VIPOR). I had a lot of body itching before my Complete Remision but not body itching presently. But I suddenly have developed itching of scalp, especially the front part at the hairline with a lot of redness. I thought it was dry scalp or an allergic reaction to my shampoo or conditioner. And I was also concerned since I have had a few basal cell skin cancers taken off. I tried to use hydrocortisone cream but it did not help much and I have been on certizine for allergies, too. And my itching is only right in the hairline at the scalp and is not hives or all over my body. I Just saw a dermatologist yesterday who said it is eczema in that scalp area and gave me a liquid steroid to put on a q tip and apply small amount each night. He said that eczema is not uncommon with those of us with poor immune systems. His treatment worked really well even the first night. I have to use it once a day for 10 days. You should go to a dermatologist to find out the EXACT cause of YOUR itching as the remedies can vary greatly with the cause.

[Marimbagirl in reply to ViPOR]

Thanks — yes, it looks as though a dermatologist appointment is a good idea. Too bad it takes so long — I have been waiting a month to see my NP (hard to find a GP where we live, but I am very pleased with my Nurse Practitioner) and then a referral to dermatology will take some more time, but heading in the right direction. This started on my scalp too, around an enlarged node, but that has subsided a bit and now it's legs, arms and back. Crazy-making!

[Phyllis731]

My primary doc recommended Sarna some years ago and it has worked like a charm for me. It is over the counter at drugstores and inexpensive.

[Marimbagirl in reply to Phyllis731]

Excellent — I see it is available in Canada, so guess what I am doing this morning?

[Upthenorth]

I had itching hives previous to starting treatment for CLL. No one figured out what caused it, but all subsided after I started taking ibrutinib. I figured it was a penultimate symptom…

[Marimbagirl in reply to Upthenorth]

Nice to know it might be self-limiting!

[Virgo10]

Maybe see a doc to determine why you are itchy.

[Marimbagirl in reply to Virgo10]

Yes, just counting down the minutes until my Oct 1 appointment