Itching with CLL

[40fo]

Diagnosed 11 years ago with cll. Two rounds of chemo with rituxin , after last round and 18 months later I was started on ibrutinib and had no side effects for 3 1/2 years but then it all went south. Horrible side effects which caused my doctor to immediately discontinue the ibrutinib. My white count was 4,000 when I went off and has stayed in the normal range for 8 months. I’m feeling well except that I now need immune infusion, which I have often. My problem is that I’m having horrible itching along with a raised rash. My oncologist only prescribed a type of allergy pill which doesn’t no more than Benadryl! Itching it only under arms, around neck and unfortunately in my crotch area! Anyone else have this problem. Thanks in advance for any help.

[lankisterguy Volunteer]

Hi 40fo,

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You may find some useful past discussions in the box on this page labeled: " Related Posts"

*cll related itching solutions

healthunlocked.com/cllsuppo...

*CLL, Rashes, hives and itching

healthunlocked.com/cllsuppo...

*CLL and itching.

healthunlocked.com/cllsuppo....

*CLL and itching!

healthunlocked.com/cllsuppo...

*Itching healthunlocked.com/cllsuppo...

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Itching is a common problem for us with CLL, here is a link to the 132 past postings that inclued that word. healthunlocked.com/cllsuppo...

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Len

[WinJ3]

Hi 40fo, I can definitely sympathize with you. Mine was a nightmare from hell. I was itching all over my body and was scratching until blood came. The doctors ruled out kidney disease as a cause. My dermatologist did biopsies that confirm Vasculitis and an area in my groin area as eosinophilic cellulitis. My specialist said it was related to CLL.

I was taking 50 mg of Benadryl every four hours and it didn't help at all. An Allergists I was seeing prescribed Doxepin and Zyrtec. I started with 50mg and worked up to 150mg nightly. Now, I am on Imbruvica, but still taking Doxepin.

I also need to take Xanax (as needed) and Eszopiclone (as needed) nightly for sleeping.

I know this is a rare type condition and my doctors had a hard time diagnosing and a harder time to treating it.

Hope this help some

Win

[Jm954 Administrator in reply to WinJ3]

I’m sorry to hear about this but thanks for helping 40fo with your experience

Jackie

[GMa27]

I have had chronic itching. Acupuncture has helped. Also used ice and Aleve. Itching remedies did not work. It's actually a " pain". Once I used pain meds, I got some relief. It actually disappeared for 5 years. Just returned on my upper arm last week. Hopefully short lived this time. Had 25 years of it....very exhausting. I don't know if mine is CLL related.

[Someca]

yep i itch same as you... Im a watch and wait. No treatment. Hydrcortisone cream offers me some relief. I bought back good quality aloe vera lotion from Tanzania. I think that helped as well. Worth a try IMHO. Cheers

[Eucalyptus22]

For itching I use 3 drops of lavender oil, 3 drops of frankincense oil in some carrier oil like almond oil. Rub into the itchy areas several times a day. Works well for me. The essential oils must be 100% pure.

[JustAGuy]

Oatmeal provides good temporary relief. Put some dry in a sock and put it in your bath water. Or cook some with a little more water, cover it, there will be a lot of foam and a gel which forms on the top. The gel can be applied to the itchy spots. It's maybe a little messy for some. If so then try the bath...

[Coolerjoe]

My use of Benadryl was part of my trial they administered it to me in injection form when i was receiving Obinutuzumab.

[Pogee]

My understanding, not being an oncologist or other medical provider, is that the issue was the Rituximab, not the ibrutinib. If you do need to go back on a target drug you might want to consider going back on ibrutinib without Rituximab. This, of course, doesn’t address the itching issue itself, but others more knowledgeable have weighed in on that matter. Best of luck.

[40fo in reply to Pogee]

Itching began after being taken off of ibrutinib due to toxicity issues with the drug. Rituxin was given in 2011 and then again in 2015. That’s why this is so frustrating . Seems to have no connection to a drug. Thanks for trying to help with this issue.

[Pogee]

Perhaps no connection to a drug, but possibly to some food you've eaten or been eating, or some synergistic reaction between two or more food sources and/or other drugs. My non-medical advice is that you consider stopping the things you've been eating and/or any drugs you've recently started—if you can—for at least a few days, then keep a journal of whatever you start putting into your mouth. I may be the exception, but I had great success doing that after I totally eliminated everything, including ibrutinib, for a few days, then restarted ibrutinib only, at a different time of day, drinking lots of water and having a high protein diet. Good luck to you.

[CJinxy]

Have you recently had any vaccinations? My husband had extreme itching all over for about a week after the flu jab. This happened two years in a row and we didn’t make the connection the first year but after it happened again the next year his oncologist suggested not having the annual vaccination😞. So hoping you find some relief and some answers.