I have been on 400mg Tasigna since early feb. I have the most horrid itchy spots on face and parts of body, behind knees and in various creases! Anyone else getting this problem? My face looks like that of a teenager with excema!
Any solutions?
Help please
Pennie
Hi Pennie,
this must be a really annoying side effect. It sounds just like eczema and as I suffered from that for periods of my life I know just how uncomfortable it must be.
I can only suggest you try some form of alternative therapy... of course with the support of your clinical trial team.
What is somewhat reasurring though is that a rash on the skin (our biggest organ) is much better than the alternative which is that the toxicity being centred in another organ such as your liver or lungs with far worse consequences.
Not much help when you have such visible and annoying symptoms. The only problem for patients taking nilotinib is that there are not that many of you! so you do not get much feedback on the ways to offset the side effects.
Finger crossed that this particular side effect will lessen over time as your body gets used to the drug.
I met with 3 of europes most experienced cml doctors over last weekend in Florence and they all thought that nilotinib was a particularly potent inhibitor of bcr/abl and potentially a very important advance.
I did find that TCM was very effective in dealing with eczema type rashes (and I had a particularly serious attack a couple of years ago) so maybe as you are having regular blood and protein testing you could try this method. At least if your liver enzymes started to rise you would know about it and could stop the herbs.
hopefully you will continue to respond well and the rash will recede with time.
Sandy ;o)
