Ipi/Nivo Itchy Skin Rash

  • 8 replies
  • 58 subscribers
  • 1061 views

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!

  • It has certainly calmed down after just a few days on steroids plus cream.  A lot of my back and joint pain seems to have gone as well!  My treatment is now resuming at the end of this month so keeping my fingers crossed. Its certainly a complicated path to navigate!  I'm being treated at St. Georges in Tooting and they have been excellent.

    Thank you so much for your feedback, its been good to know my side effects are not unusual an also to expect them to return!

    Best wishes

    Kate