Ipi/Nivo Itchy Skin Rash

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Hi everyone this is my first post on here. I was diagnosed with a stage2 melanoma and have since had 1 dose out of 4 of the combo drugs, then moving on to biweekly/monthly Nivolumab.

I’ve had really awful itchy skin all over and a terrible red spotty rash covering large parts of my body. Has anyone else had this reaction and if so did it last quite a long time? Any experience/advice with this side effect is much appreciated, thank you. 

  • Hello

    I had a similar problem after my first dose and suggest you ring your support nurses tomorrow.  I had a grade 3 rash which was sorted by steroid creams and some emollient creams. I was also prescribed steroids but in the end didn’t need them. But it can definitely be a tricky side effect and your medical team needs to know. Best wishes. 

  • Hi KHH, thank you for your response.

    I have contacted my nurses and been prescribed a steroid cream just a little hesitant to use it as I don’t want to cause more harm. But will keep an eye on it and go from there. 

    Did yours calm down after a while?

  • It did but it took a while ( two weeks, I think )  and I definitely needed the steroid cream . 

  • Prash

    i should possibly have added that it was a good couple of weeks using the Steroid cream and I went back onto it a couple of times briefly.  The whole itch / rash thing took several weeks and I got the steroid cream because I started coming out in ‘pustles’ I think they called them .  

  • They have now prescribed me oral steroids and delayed treatment for a week, hopefully they kick in soon and it all clears up! Thanks for your help Blush

  • Hi there

    I've only just joined this forum so hopefully you've improved since  your post! I've got stage 4 melanoma snd managed 3 rounds of ipi/Novi combo but had continued severe itching and rash so then had a week of high dose steroids and cream regime and it has settled down. Now waiting for Novi maintenance treatment. I just hope 3 rounds is enough to give me a longer prognosis. 

    Good luck with your journey!

    Kate

  • Hi Katie,

    Glad to hear your rash has settled down, it’s really awful once it starts! Mine’s been hanging around for nearly a year now and only stays away while I’m on oral steroids, it comes right back when I try to wean off them unfortunately. I only managed two rounds of the ipi/nivo combo but hoping to get back on it soon.

    Wishing you all the best with your treatment — hope it works really well for you!