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Severe rash on Nilotinib anyone?

I have developed what seems to be a severe allergic reaction to something! Emergency A&E visits , intravenous streroids, etc eetc. Have been taken off everything but Nilotinib, and on restricted diet while Hsp try to find the answers. Has anyone else had a simlaer - hives temperature swollen moth etc please?
Pennie

Hi Pennie... sorry to hear you have such a bad reaction - although a rash is clearly indicated as one of the common side effects of nilotinib, I assume the severity of your rash indicates an allergic reaction to something else which is why your doctor has not stopped nilotinib?

Sandy

Just back from Kings - 4th visit this week to Dr or hospital! Another severe reaction this morning. Now off Nilotinib again. Stopped over summer as well and lost CCR! Thats been the worry again now. Can't tolerate Dasatinib, or Gleevec. Fed up and feeling itchy, sore, confused and more than a little scared. Back at Kings first thing Monday morning, unless have to go in over the weekend. I have come home with so many different anti allergy pills and stuff plus steriods etc feel I will rattle as well as itch by tomorrow.

Pennie

Hi Pennie
Sorry to hear you have this. I have every sympathy for you, although i am on Glivec but also suffer terrible rash. Hope you can get it sorted very soon. Did you also get a rash on Glivec? Hopefully the anti allergy pills will works and they can put you back on the medication really soon. I find a warm soak in the bath and loads of Doublebase mouisturiser helps soothe it, but it never totally goes away.

Hi Pennie,

I had exactly the same on Nilotinib after 18 months of treatment. I awoke in the middle of the night with severe facial swelling etc. Hospital, like you, hooked up to iv steroids for 4 days. Itch, swollen eyes, burnt skin, temp. I was taken straight off Nilotinib. It took a few weeks to settle down with high dose oral steroids. The hospital did re challenge me with Nilotinib again at low dose with steroids but I started having problems again almost straight away. sorry this is of little help to you.
I know exactly how you feel regarding treatment options. It's very difficult when you have tried most of the drugs and is a great worry. Its so frustrating. Hope they can come up with a plan for you.
Wishing you all the best.
Ali.

Hi Pennie

Sorry to hear you have problems again

I'm on Nilotinib and have developed acne roseace on my head .. Taking slow release antibiotics and have a lotion to put on in which seems to be working. Seeing the dermatologist on Friday again

Have you tried bosutinib. This may be worth s try

Best wishes

Steven and Carol

Thank you for your reply Ali. It's a very scary place to be and it helps to know I'm not the only one. I am being front loaded with steroids right now in the hope that I can restart Nilotinib later this week. It has worked so well for me till earlier this year, so this is all very difficult to deal with.

Not sure of the path ahead, but I have found myself in these frustrating places before with the old CML, and I guess will find a way through this one as well.
Its a complicated road we follow.
All the best
Pennie.

Hi Pennie
It may be worth seeing if you could try Ponatinib. I have had problems with Glivec, Nilotinib and Dasatinib and they allowed me to try Ponatinib (from Hammersmith but Kings are now starting to use it) and three months in and all seems well. I have tolerated this far better than any of the others and my results seems to be going down (touch wood). Always worth asking
Hope all goes well

K

Dear karena,

thanks for updating here on your experience with TKIs and now ponatinib. This is an interesting drug not least because it deals with T315i mutation. exciting times once again, but it is very helpful to have 'real time' experiences from people who are being treated with this new TKI therapy.

thanks again,
Sandy