Perjeta and itching

I think this has been discussed a while back, but I was wondering if anyone has anything new to report. I’ve been on Herceptin and Perjeta for about 7 years so far. Weird itching on both my arms (without a rash) started about 6 years ago… got progressively worse, and I’ve been on and off various medications to try to mitigate it. Oral meds, topical, acupuncture, ice packs etc. Now it’s itching/burning on the sides of my neck, shoulders and arms. My new-ish oncologist recently said this is a side effect they sometimes have seen with Perjeta. I decided to take a break from the Perjeta to see if that would help.
Has anyone else has a similar experience? I’m just wondering how long it might take for the symptoms to (hopefully!) stop after I’ve been on Perjeta for so long… seems like I should be patient but the itch/burning pain is so frustrating and impacts my sleep. Thanks for any thoughts. 😊
Comments
-
I’ve been on Phesgo (Herceptin/Perjeta injection) for almost two years. I have the same itching problem. Only my forearms so far. Sad for you that it is happening other places. Makes me worry 🙁. What oral meds have you tried? I’m still getting some relief with external creams and lotions. I also have a drippy nose-annoying but manageable.
1 -
I have been on Herceptin and Perjeta for almost four years now, and Phesgo (injection version) for one year. I have the same terrible itch, it's like pins and needles, and gets worse at night when I am trying to fall asleep, but definitely can be activated randomly throughout the day. It's on my arms and back of my neck, as others have stated. Lately it's also been on my scalp. Ugh! My left arm is always the worst though. I also have the drippy nose thing @lakehousegal ! Ugh.
I haven't found much that helps, and it really does make you feel crazy. Sounds like many people try Claritin and Excedrin PM? I use Eucerin skin calming cream that kinda helps. Good luck to everyone. xoxo
0 -
Hey there, @marlapdrsn! Welcome to the community, and thanks for posting and sharing your experience with us. 😊 Hopefully, you'll find some useful tips from other members here. For now, here's an article from our main site that you might find helpful: Managing itching
Looking forward to hearing more from you soon!
The Mods
0 -
So sorry to hear about all of the itching due to Perjeta, runmommy, lakehousegal, and marlapdrsn. I just started the HP protocol (generic) and after my third infusion, as my DH was driving us home, I began to feel some itching between my shoulder blades. By the time we arrived home (90 minute drive), my back was covered with blisters that itched. When I mentioned this to my MO, she said it's unusual to have any itching on this protocol. However, I was given a Claritin tablet as well as Benedryl into my vein prior to starting my 4th infusion. It helped a lot. However, I still have random itchy blisters show up from time to time. Always on my torso (front and/or back). It does help if I take a Benedryl, though it makes me sleepy. Not something I want during the day. At night my symptoms are less, so taking anything before I go to sleep doesn't make much difference.
Sometimes I wonder if something I eat interacts with the drugs to cause this hyper itching. Any additional thoughts and suggestions would be appreciated.
Best,
LLN
0 -
I have been on Perjeta and Herceptin for 11 years. I chose to not take the combo shot. I do not mind the time in infusion and really did not want another time to be poked with a needle.
I had intense itching on my forearms and possibly my scalp. If I could resist the urge to scratch it eventually calmed down. I no longer seem to have this itching.
My main side effects are peripheral neuropathy. I feel like it affects my balance. My skin can feel easily burned at times (by a cup of tea). Do any of the rest of you experience this?
0 -
Hi @meowcat_62 and welcome to Breastcancer.org! We're so sorry for the reasons that bring you here, but we're really glad you've found us. You're sure to find our amazing community an incredible source of advice, infomation, encouragement, and support - we're all here for you!
We're sure others will be by soon to weigh in with their experiences with Perjeta and neuropathy. In the meantime, you may find this info helpful:
We hope this helps and that you find some relief soon! Let us know if there's anything else we can do to help!
—The Mods
0