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Having a break fro Nilotinib.

I have only been on Nilotinib for 10 days having transferd from Glivec because of bad side effects. I have had the most terrible red & itchy rash (from head to foot) which hasnt been helped taking anti histamines.I look like I have 3rd degree burns.
I spoke to my consultant again today & he has recommended having 7 to 10 days break & then trying again. I am very worried about not taking any medication. Does anyone have any experiance of this?
All the best to you all.
Ali.

When I became intolerant to Glivec and was waiting to transfer to Dasatinib I was off the meds for 7 weeks. My blood results were all coming back fine and they said there was no need to worry. Interestingly if I had taken a break from Glivec when I had a tummy bug I may not have become intolerant.
Karen

Dear Ali,
I know this must be distressing for you but try not to worry unduly. 7-10 days is not long.. it will probably take this long for nilotinib to get to low levels in your blood/plasma. The rash will hopefully then subside and you will be able to go back to taking the drug... without the rash coming back.... fingers crossed ;o) Your body will probably take some time to get used to the new drug. Did you have a rash on imatinib?
How are you finding the change in regime...i.e taking nilotinib during fasting?

please keep us updated and if you are worried then ring the consultant and ask for reassurance. I am sure you will be OK.

best wishes,
Sandy

Thanks for your mails. I am so worried that the rash will come back when I re start. I dont want to go back on glivec as I have felt so much better since they switched drugs. I didnt have a rash when on glivec, but every other side affect. I have been ammazed at how well I have felt on nilotinib, but the rash is just awfull and very itchy. I think I shall be bald soon as I just feel I want to pull out all my hair, its driving me MAD. My consultant is away now till 6th Jan, but I go back to see another Dr on Tuesday to have bloods checked etc. I feel this is a set back I hadnt expected as I dread the thought of glivec again now Ive had some respite from the side affects.
I find the fasting ok with nilotinib, its quite easy and at last I am loosing some weight. I think coming off glivec has helped as well. Its great to see non puffy eyes again, I'd quite forgoten how my eyes looked before treatment!
All the best,
Ali

Hi Ali

I also had a terrrible rash when I started on Nilotinib, after a 10 day break things were much better. Still some spots particularly in my hair, that itched like ****. My homeopath suggested putting Bicarbonate of Soda in the rinse water when I washed it, that helped a great deal. I also put it in the bath water now and that has calmed things right down.

Good luck.

Pennie.

I was so interested to read the posts today about Nilotinib. I started Nilotinib 2 weeks ago (due to Glivec intolerance) and after 4 days developed an impressive rash that got progressively worse. Rather than have a break from Nilotinib I have been prescribed prednisolone - the rash is better though not gone and still itchy - I so relate to the comments about itchy scalps!! Does anyone have experience of the rash getting better?

I am so grateful to hear that I am not alone as I have been feeling quite vunerable particularly in the light of not tolerating Glivec.

Best wishes fellow sufferers

Rachel Baughen