Inrutinib can indeed cause skin problems. Over 10% of patients report some sort of skin issue. I had a combination of skin and GI effects that I gave 6-8 months to see if my body would adjust. It didn't, and even though the drug worked great on my CLL I stopped it. I've tried another BTK type drug and did not have skin problems. So maybe you can see about switching, if this side effect won't go away and really is bothersome. The drug I am on now affects my skin and GI much much less than the ibrutinib. I did have to argue with that doctor, he was not wanting to prescribe something else. If the itching is intolerable, if it were me, I would insist on switching. Our Quality of Life during treatment is at least as important as "does the drug work" IMO.
I also switched from Ibrutinib because it caused an eye edema, but it also made my nails, cuticles and finger tips cracked an painful. I am now on Zanubritinib, which seems to be causing the same skin problems. I would be interested to know which medication are you on now and what are the side effects? Thanks!
It usually got worse when I was treated for my CLL.
Most of the time I used cortisone creams for a few days and then moisturizer after every shower.
Ibrutinib made it much worse and itchy The best treatment during Ibrutinib was photo therapy - light box with UVB rays often prescribed for patients with psoriasis.
In the summer I started with itching on both my legs and back. I was on Wait and Watch at the time , could not help but scratch my legs constantly. What I learned from this do not scratch your body, I developed squamous cell skin cancer, the Dr. told me I caused trauma by scratching my legs. Had to have three surgeries it took three months to finish, before I could start on Calquence. The skin cancer was growing so fast on my legs. Glad that's over. Have to see my dermatologist every 6 months.
Husband has had this issue for years. Never on Ibrutinib. Purple bruising thin skin on forearms and back of hands. Even remission on no treatment severe itching. Derm just prescribed Eucrisa. Expensive and at first rejected by insurance but got formulary exception still cost a little over $200 but very large tube. He started it today and if good result will report back..
You might want to ask your doctor about hydroxyzine 25mg for night time use (do not drive while on this as it will make you fall asleep. It is an antihistamine.) I have hands and feet that itch to the point of wanting to cut them off for a few years now and this has been my savior. As far as the bruising/scars go it may take a long time for them to go away. I had 9 mosquito bites on my ankles when my hemoglobin and platelets were really low last year and now the purple scars are still on me. The two mosquito bites I got a month ago have healed since my platelets and hemoglobin are almost normal thanks to the calquence once a day. Be well. I hope my suggestions help you. Try to wear socks in the mean time and stay under covers don’t use cold water on your skin and don’t stand on anything that is cold for a long time. I used to have to run back in bed and stay under covers for 30 minutes if I stood on cold tiles for 5 minutes and my feet would itch so bad and then swell 2X the size. Ugh! So not fun ! Good night
I found a wonderful lotion while on Ibrutinib. I would highly recommend giving it a try. It's called Gold Bond Extra Strength Body Lotion Triple Action Relief it's for Extra Dry and Itchy Skin. It's in a bright green bottle so it kind of stands out. I got mine at Walmart but I've I seen it at drug stores as well. It has a cooling sensation to it so it feels good. It doesn't smell the best but it has worked the best for me. I hope it helps you as well.
Also my doctor reccomended that I cut my fingernails so I don't inadvertently get an infection from scratching at night while sleeping. I would break the skin sometimes scratching in my sleep. Fingernails carry all kinds of germs as I'm sure you know. Nobody wants to wake up with a staph infection. Not sure if you thought about this yet.
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