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Stopping Nilotinib & dose reduction.

Having been on Nilotinib now for just over a year, I am having awful skin problems on my face & lips wirh a severe rash & burning sensation. Having spoken with my consultant today I am to stop the dose for now, continue with the steroid tablets & see him in clinic on Thursday. He is talking about reducing the Nilotinib to 300mg as there has been some research into dose reduction. Does anyone have any information on this please?

When I first started Nilotinib I had this same problem but it settled over time with the steroid tablets, although a higher dose than I am on now. I dont know why this should flare up again out of the blue.

Hi Ali,

I recently moved over to Nilotinib and I am on 300mg.  I believe that there are a few of us who are on this dosage and achieving good responses but with fewer side effects.

I hope the steroid tablets work, it sounds very uncomfortable.

Take care

Lynn

Jed is also now on the 300mg dose which has helped with side effects.
At the time that he changed doses we were told about some recent research that had been done to compare outcomes of patients on 300mg vs 400mg.  This research showed that there was no significant difference in outcomes i.e. you can do just as well on 300mg.  This was very reassuring to us, and hopefully future PCRs will prove this to be true.

Here's a link to the paper

http://www.medscape.com/viewarticle/713786

All  the best

Bhiru

HI Ali,

I hope the rash and other effects clear up soon. Also hope you can try the lower dose as it looks like it might be fine. Remember the standard dose of dasatinib began at 140 mg and then they found that 100mg was just as effective. Maybe this will also be the case for nilotinib..

Best wishes, I know it must be a worry for you

Sandy

I have just finished the third dose of steroids via IV. I have never had such an extreme reaction before. My face & neck were burning red sore & swollen. My eyes had started to swell and my face scaled like a fish. It has been very upsetting for all of us. The hospital has been fantastic & I didnt feel alone, they were there for me.  Things are calmiing down & I am off Nilotinib, still on high dose steroid tablets but heading in the right direction. 

I return to hospital on Thursday to re start Nilotinib at 300. I just hope it doesnt flare up again when I restart. The question is why did It suddenly develop such a bad reaction when all has been fine for 18 months?

 

I feel reassured from your mails that 300mg is ok. My consultant seemed informed about this dose as well.

Thanks

Ali