Herceptin and Perjeta - joint pain - HR-/Her2+

I had knee stiffness and leg weakness during Herceptin. I was able to jog on the treadmill, but it was difficult to walk up stairs. It improved after I finished Herceptin.

ask about Claritin it’s isually inflammation. It helps with my XGeva shots and it made the difference with my Nulasta shots . I took two Aleve that morning. And the week before every morning a Claritin and continued for the next few days. Now it works so well on joint issues and inflammation I just take it daily because I also have allergies. Just a passing thought. Good luck!

DATNY there is a thread in the HER2+ section of the forum that you might want to check with many women reporting severe joint pain from H&P, and two have reported that it did clear up a few months after they finished H&P (yay!). Several say it got so bad after a while that they needed pain meds. I know it's not officially listed as a side effect by Genentech (although it is some on medical/drug websites) so doctors won't acknowledge that it's a SE of the drugs, but there's an awful lot of us having the same problems, especially with knees and back.

FWIW, I was already post-menopausal when DX'd. What I'm experiencing now isn't my typical "growing old" joint pains, and the pain started when I began H&P treatment, so they can try denying it or blaming it on something else all they want. I think there is a lot of evidence pointing to it being a side effect of H&P. I do think that Herceptin somehow messes with our estrogen levels even though it's not a hormonal therapy because I'm also having hot flashes and night sweats that are twice as bad as what I had when I went through menopause (as if it wasn't enough fun the first time!).

I developed all kinds of joint pains after I was on Herceptin alone. My MO didn't really think it was a SE and I had been on Cipro for an infection when it began. I actually skipped one Herceptin infusion to see if it made a difference. Nope!

I still have pain in my knees (stairs are the worst) and my fingers (just when I wake up). Who knows if it's from chemo after effects, lack of estrogen, or getting older.

PS - I did have them slow down the infusion rate after I had two instances of weird reactions towards the end with heart palpations, swallowing issues, and increased BP. That worked.

The infusing instructions for Herceptin state that it can be infused from between 30-90 mins, after the observation of a successful reaction-free initial loading dose, so a longer infusion should still be considered standard of care - a number of centers just don't want you in the chair for 90 minutes. In some cases it means they have to bill insurance for an "extended" infusion and it creates more paperwork. I found that going at the end of the day was helpful - that way the folks who were receiving chemo infusions had gone home and the nurses were less taxed with watching too many patients. That said, I was only getting Herceptin since Perjeta had not been approved yet.

I had 17 HP treatments, last one was April 4, 2018. The muscle/joint/bone pain got worse with each treatment, back, hips legs. It was so bad in my hips and back I couldn't sleep. I went to my general doctor for it and doc sent me for a dexa scan which showed osteopenia, which she didn't recommend any meds for right now. Anyway, within a month of finishing the HP, all the pain was gone. It was amazing to walk and sleep without pain.

The oncologist had prescribed opiods for the bone pain. I ended up with a anal fissure because I couldn't manage the side effect of constipation. I was eating/drinking correctly to manage it but it was so severe I needed to take another med, which I didn't know. I didn't really understand the whole opiod/constipation process but I do now! I still have a lot of pain pills left. I generally stick with tylenol now and only take it occasionally. I never want another fissure because that pain was pretty bad too.

I don't have good pain management, in my opinion. I really don't know what the answer is.

I had a recurrence recently and had to start HP again. Treatment number one was last week and so far no pain but I know it's coming.

I’ve been on Herceptin and Perjeta for 4 years. Tried different pain meds that made me itch incessantly. Now on Fentanyl patch and tramadol for breakthrough leg, hip pain. I had an infusion reaction after around 45 txs. We now are trying i/3dose of H weekly over an hour and Perjeta full doseveveryb3ervweekover 90 minutes. Seems to be doing better Except I had to go back on premeds and hare the steroid.

Put in a call to your Doc about slowing the Herceptin. It really helped the low back cramps during tx

I’m glad I found this! I am on herceptin only and have been struggling with joint pain and stiffness, beginning with my last tch back in March. I was able to deal with it at first, but now it’s getting much worse, especially in my left knee! I just had exchange surgery for reconstruction and was given norco for pain, and of course that helps, but I have 2 young kids and can’t be all spaced out on pain meds, not to mention the constipation that goes along with it. I also am dealing with an anal fissure, that got better, but I think is back now since getting back on pain meds. The GI dr said I am looking at a colonoscopy soon. I began taking advil with claritin yesterday and it seems to help but by the end of the day my knee is killing me. I sent a voicemail to my oncologist, but no call back. I go next Friday to see her and will see what she says. Of course in my mind im going straight to the pain is due to metastasis! But I guess that feeling will never go away

I had my appointment with my mo last week, and she said the pain was due to the lack of estrogen. She said estrogen lubricates things in the body- when the lubrication is gone, joints will hurt. Of course when I had an appointment the pain was gone, but it’s come back some, just not as bad. Hope everyone is doing ok

I had a heck of a time with both Herceptin and Perjeta. I have been off of Perjeta for about six months and Herceptin for about two and the joint pain isn’t as bad, and is slowly getting better. I still have some, which my MO attributes to Arimidex, (I am 41, but in a medically induced menopause.)but it is managed with Tylenol and, on occasion, Ultram. (I am allergic to NSAIDs.). My husband massages them at night and heat helps as well.