Intolerable Itching from Perjeta.

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Arc66
Arc66 Member Posts: 9

I am four months short of being 6 years on all of the above drugs. I am suffering from an itch that is (I believe) a side effect from Perjeta. I have exhausted the initial benefit of antihistamine tablets. I am now using icy cold packs that are offering me a quick evening fix when the itch becomes unbearable. However, I am tearing the arms and neck off myself during the night. This itch has been with me for the last 3 years and I don't know how to cope going forward. If you experienced itching but have found relief with a drug or lotion then I would love to hear from you.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2020

    Thankfully, that unbearable itching went away for me after my first few infusions but I just want to let you know I empathize. I still take a daily Claritin to try to keep any side effects under control. I was putting the strongest lidocaine ointment I could find on my itchy back at the time.

    Interesting note...in September I was bitten by mosquitoes and a bite on my arm caused my entire forearm to become unbearably itchy. Never reacted to a bite that way before. Even now that it’s healed, I still feel itchy in the area at times. Wonder if the drugs cause some kind of enhanced reaction to other allergens. I tried many topical creams on this area...calohist seemed to work the best. My go-to lidocaine was doing very little.

    Hope you find some relief - is taking a break from Perjeta an option?


  • AmyCinny
    AmyCinny Member Posts: 21
    edited November 2020

    I experienced horrible itching from Herceptin. It took a few miserable months to figure it out, but what finally worked for me was to have a full load of both IV antihistamine and steroids before each infusion of Herceptin. In addition, I switched from the normal schedule of Herceptin every three weeks to a weekly infusion. The combination of the titratedHerceptin dose with the full dose of the antihistamine and steroids is what helped. However, I did still experience itching, but not as horrible and I was able to control that as long as I immediately applied Triamcinolone cream .1%. I couldn't leave the house without the cream - it was the ONLY thing that alleviated the itch at all and as you write, the itching was unbearable. By the way, OTC antihistamines did nothing.

    Good luck. I hope this helps.

  • Toto06
    Toto06 Member Posts: 61
    edited November 2020

    Thanks Olma61 for your help. My Oncologist did suggest about dropping Perjeta but to be honest I would be afraid to, I'm a if it ain't broke don't fix it person. I am close to six years on this protocol and I don't want to risk coming off anything even with this nightmare itch. I am going to talk with my Oncologist about getting the full load of both iv antihistamine and steroids before treatment (Herceptin/Perjeta) as suggested by AmyCinny. x

  • Arc66
    Arc66 Member Posts: 9
    edited December 2020

    thanks for your comments. Please note that on 21st Dec I got a piriton infusion (having discussed it 3 weeks prior 30th of Nov with my oncologist) before receiving Herceptin and perjeta infusions and I found it hugely beneficial. Kind regards.

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