Itchiness on knees arms and back.

[fish61]

I am in remission fromCLL for about 6 months now and I am still in a clinical trial therefore iI take

420 mg of Ibrutinib daily .

Recently I have noticed that I itch all over, most of the time....has anyone had that experience??

fish 61

[Cllcanada Top Poster CURE Hero]

I just started ibrutinib 3 weeks ago, and have intensely itchy scalp... no rash... it starts about an hour after I take the pills and last for about 3-4 hours...

It is seen in about 11% of people on Imbruvica (ibrutinib)... the term is puritus...

~chris

[fish61 in reply to Cllcanada]

thanks for the comment ...it isn't my imagination fish 61

[cllgirl]

Yes. I have been on Ibrutinib for over two years and experience the same itching you are having, the worst is on my back.

[lankisterguy Volunteer]

I switched from Idelalisib to Ibrutinib 9 weeks ago and the Psoriasis I have had since my CLL diagnosis in 2008 kicked into a much higher gear.

It now itches on my arms, legs and around my waist unless I apply CeraVe moisturizer daily (previously I only needed to treat in the coldest driest days of winter- now it's needed even on the hot humid summer days). I assume I will need Fluocinonide or Triamcinolone steroid creams next winter.

I have always attributed my Psoriasis and other skin problems to an autoimmune reaction that results from poking the CLL "bear" with treatment efforts. The more in control my CLL, the worse my skin- others see their autoimmune reactions vary opposite to mine.

Suggest you see a dermatologist/oncologist to biopsy the itchy areas and zero in on a diagnosis. CLL can show up in several different layers of your skin, so getting an expert to help with treatment is wise- and you can get your full body scan for skin cancer at the same time. Remember that we CLL patients are 8X more likely to develop skin cancer- and skin cancer needs early detection and treatment - unlike CLL.

Len

[PE1234]

Three weeks after starting Ibrufinib I too had very itchy and also like burning skin on my legs .This seems to have settled down now but I do get the odd patch on my body .I did mention this to my consultant on Monday and he said this was due to the Ibrufinib .

I have been taking Ibrufinib as a first line treatment for just over three months so I am hoping that all the odd side effects (sore skin blood spots feeling tired but not sleeping well will settle down as time goes on )

Hope things soon settle for you which I am sure they will .We are very fortunate to have such good treatment these days .

I am going to see if I can buy some of the cerave cream that Len has suggested as I have tried a few creams but they don't seem to work for me .

Take care

P

[fish61]

Thanks Len and Pet1234,

I spent yesterday with an old friend that was and still is a practicing pharmacist and he said if none of the creams and pills worked try splashing on oral adult liquid benadryl

on the itchiness... do not drink the liquid just apply to your hands and rub the itchiness...... I tried it and it worked ... it is a much less expensive than the creams that are sold...fish61

[PE1234]

I shall defiantly try this .

P 1234

[fish61]

It works!!!! Clear liquid Benadryl ( store brand is cheaper ) stops the itching ....big problem getting it on the middle of my back... wife is away for 3 weeks so ZI may have to call rent a wife.. (kidding ) fish 61

[wroxham-gb in reply to fish61]

Where can we buy this please. Thanks to you all for posting about this.

Thanks

Sue

[fish61]

In the USA I bought a CVS GENERIC BRAND called "maximum strength ,dye - free ,adult allergy liquid medication" all it has as ingredients is DYPHENHYDRAMINE HCL USP 50 MG.

It is a clear liquid that supposedly has a cherry flavor (never drank it) any pharmacy

should have this .. remember don't drink as the directions say ...just splash it on ...it stays somewhat sticky for a while but better than being itchy all day.

I laughed at the suggestion of using it in this manner as I thought the pharmacist was going to wave a feathered chicken leg over me .... but it works! Good luck and please tell me your results... Fish 61

[wroxham-gb in reply to fish61]

Thanks fish 61. Will let you know about results as soon as.

Sue