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Hi
Brian was diagnosed cml in Feb 2007 and been on glivec, everything is going ok except he has had a horrendous rash to deal with that is red, sore and itchy all over, plus his eyes being very swollen. At his 6 week visit yesterday it was decided he must come off glivec and try sprycel, which should happen within a fortnight when the permissions are given. His onc. said he had seen rashes before but this was the worst! All these drugs have side effects and of course we are wondering whether Brian will still get a bad rash or hopefully get relief from it. Does anyone have any experience of the benefits regarding side effects if you change from glivec to sprycel?
Love to all
Christine

hi christine,
i do know that a rash is common but have only heard of one that sounds as bad as brian's..... in fact elizabeth was hospitalised with her rash as it was so awful (this was a few years ago so they were not sure what had caused it) i am sure she can tell you more. but as far as i can remember she was taken off Glivec for a while and the rash subsided and didn't reappear once she started Glivec again.

i had a rash on my leg (again in the early days) and was treated with mild cortizone cream which successfully dealt with it and . i didn't have to stop Glivec.
this sort of rash looks and sounds like a serious allergic reaction.... so maybe a Glivec holiday would do the trick. or has brian already tried that?

it may turn out that he is intolerant of Glivec and Sprycel may have a better profile for him. Tasigna's side effects (from clinical trial reports) does not seem to include the rash.

hope all is resolved soon,
Sandy ;o)

Hi Christine
We have spoken about this before. I sort of remember there is a reason for Brian not having steroids ? I was restarted on a low dose of Glivec combined with steroids and slowly increasing the glivec and decreasing the steroids and the rash stayed away. However, Brian may have tried this.
Re rash on Sprycel, I don't know. Hopefully this will not happen. You can discuss all this when you come to Edinburgh and the CML docs may well suggest something for Brian.
I do hope the rash does not re occur. Looking forward to meeting you both in Edinburgh.
Elizabeth

Thank you Sandy and Elizabeth. Neither his onc, skin specialist or gp were happy for him to have steroids, he had to have a course again last week, and the steroids instantly improve matters, but they say they don't want him to have them again if possible. The rash was extremely severe, and we just hope that something will come out of new changes because it really affects his quality of life. So many thanks, we are so grateful that there are these wonderful drugs available now, but would just like to get to grips with this particular side effect.
Christine