Hi everyone, looking for some advice for my husband. He was diagnosed with CML 3 years ago and has been on dasatinib, imatinib, and now nilotinib. While on imatinib, he started experiencing intense itching and a bumpy rash appeared all over his body! Literally from head to toe!! His oncologist decided to switch to nilotinib because his BCR-ABL wasn’t moving and the itching was really bad. Now on nilotinib it’s even worse!!! The itching is all day long. We’ve seen a dermatologist and they diagnosed him with keratosis pilaris. He’s tried countless prescription creams, oatmeal soaps, we’ve changed our detergent, he’s taken Benadryl, Claritin, Zyrtec, atarax—you name it, we’ve done it! Has anyone had this issue? If so, what did you do? What worked??? My husband is desperate for relief!
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Nilotinib itching
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Hi there, I was so "pleased" to see your post! I too have been suffering with an intolerable itch. I posted on this forum many months ago, but received no replies in support. I also started Imatinib in April 2018, but was changed to Nilotinib in October 2018 due to a rise in my BCR-ABL. I didn't have any problems with an itch until I started Nilotinib. It began all over my body but quite quickly centered on my scalp! I tried many anti-histamines, both "over the counter" remedies and prescription medications. I was also referred to a dermatologist and was prescribed steroid creams and shampoo. Unfortunately, I do not have good news. none of these, creams, shampoo or tablets have helped! All I can say is that it has only remained on my scalp and I can now liken it to a "dull" itch as opposed to wearing a skull cap containing a nest of red ants!!! I find direct heat and spicy food make it worse! So whenever possible, I wear a hat in the sunshine and avoid hot curries! I am sorry that I do not have better news but I would be happy to hear from you at any time for support. My BCR-ABL has been slow to respond, but does appear to be going in the right direction.
Hi again! I’m so sorry you’re going through this intense itching. Initially for my husband it started on his scalp but now it’s all over his body. He’s even losing his eyebrows. The rash is bumpy and itchy. We had some relief with Zyrtec and Claritin but that remedy quickly faded. The oncologist told us not to use any products with steroids and if we do make them the last resort. I feel horrible watching him itch all day long and he hated these bumps all over his body. I wish there was a solution for the both of you. He doesn’t want to switch meds because it’s the only drug that has actually lowered his BCR-ABL but even still the doc thinks all the the drugs will have the same side effect because they’re in the same class
Also had cml for 3 years, started on imatinib and have been on niotinib for 5 months now. Sorry to say I have no solution, but just wanted to say that the side effects for imatinib/nilotinib are not the same at all in my experience:
imatinib: daily muscle cramps (mostly hands/feet/calves, small muscles twitching), nausea when taking it with food. Mentally: tiredness "brain fog"
nilotinib: itchy skin (mostly scalp), but no muscle cramps or nasuea at all. Mentally: brain fog is gone (can't describe how good it feels to get rid of brain fog)
Just an observation if the doctor says that all tki are the same, that is not my exp.
Hi,
I too had a terrible rash when I was on imatinib. I read about a few people who stopped the medications and then restarted or restarted with steroids (at the direction of their doctor) and their rashes stopped. I unfortunately did not have that experience. I tried every cream under the sun and eventually went on oral steroids. I ultimately had to switch to dasatanib.
After my first pregnancy I had a terrible post partum rash and I used something called pine tar soap. I found it very very helpful. You need to use it a few times a day and with a cold shower. I did not find it helpful with my imatinib rash but what you are describing sounds very different from what I had. Hopefully someone can find some relief!
Be well
Hello,sorry to hear your husband is suffering.I had a terrible red itchy rash on Imatinib I could have ripped my skin off ,so much worse in the hot weather .I got rid of it by using a simple Vitamin E cream it worked like magic for me .Some little bumps remained but it took the itch away and you can apply it as much as you like .Not sure where you live but if in the UK Superdrug do a big tub of Intensive Vitamin E body cream and it's cheap as chips but was brilliant for me .I also had the rash on my back which I couldn't reach to put cream on so they also do a Vitamin E spray which is very cooling .I changed to Dasatinib eventually and the rash completely disappeared within days .I hope this helps ,Good Luck , Denise.
Hi there!
I'm really sorry to hear that for your husband.I do understand as I am also on nilotinib and had the same issue but after a few months the itching went away.May I ask you how many months now is your husband on nilotinib and what's the dose he's taking?
One advice that helped me personally at the beginning of treatment was to apply a cream all over my body which is called cicaplast baume b5.
As for the scalp he could use a shampoo with menthol that creates a sense of coolness and minimizes a bit the itching.
This is what I did and worked for me.
Take care!
Vicky
Thanks for posting. I was just diagnosed with CML in the chronic phase in May and began imatinib at 400mg. Three weeks into treatment developed large hives. Stopped meds for one week and did a week of prednisone and the hives went away. Restarted the imatinib at 300mg. Now two months into it, I have the rash over my legs, arms and torso and this time they itch. It feels like little stings. I have a steroid lotion, all of the over the counter remedies that have been mentioned and now taking and antihistamine (hydroxyzine). It hasn't stopped. My doctor is sending me to see another doc for a second opinion before switching meds. I am afraid to switch so early. My numbers are improving (hematological remission good) I have my first 3 month BCR-ABL test next month. I don't know what else to do. Any thoughts? Thanks so much.