Herceptin side effects

I’ve just had my 10th herceptin injection. Only 8more to go. Ive had aching joints and muscles to the point where I could hardly put my foot down on the floor. The pain was worse than anything I’ve ever experienced and that includes the rigours of chemotherapy.
I naturally reported this to my consultant who then sent me for X-rays. Nothing unusual, just a bit of wear and tear for someone my age(69). When I suggested it may be a side effect of Herceptin he politely told me no, and that he had never come across it before. I wanted to argue my point that I’d read so many reports that this side effect happens.
Whilst I can’t fault the treatment I’ve had I do find it very frustrating that a simple suggestion could be dismissed so frivolously.
Has anyone else had the same experience? If it’s par for the course then I just have to get on with it and self medicate to ease the pain. I’ve been going to the gym and swimming hoping the discomfort will ease. What I’m really interested to know is, will these symptoms disappear when the treatment is ended. I think I’d rather hear from someone with experience rather than a doctor who doesn’t recognise these side effects exist.
Thanks to anyone who replies.

Hello, I had Herceptin number 18 in August so am finished now. I can recommend claritin hay fever tablets to help with aches and pains. See here: myangrycancer.blogspot.co.uk/2013/02/claritin-is-worth-its-weight-in-gold.html and here if you what a better answer in terms of the science practicalpainmanagement.com/treatments/pharmacological/non-opioids/antihistamine-g-csf-induced-bone-pain


I discovered them as a help for the g-csf injections that brought about terrible bone pains. Since I get hay fever anyway I just switched to this brand (or Boots, Asda etc so long as the main ingredient is the same). I carried on with them and still take them but not every day now because there is little pollen around but I took them all through my chemo, rads and Herceptin and suffered far less than the other girls on here.


You should also make sure your Vitamin D levels are adequate


Thanks for replying and for the advice. I will certainly give it a try. I have been taking vitamin d capsules long before before my diagnosis and continue to do so. I’ll check out the links you kindly sent me. I’m beginning to feel old with all these aches and pains and this is just not me.
Many thanks again.

hello Pam, and like you I am well into the herceptin treatment every three weeks and finding the side effects hard to live with - I am trying out anthistamines, more to find any relief, and will see my GP today … at the hospital it is about the therapy and anything regarded as serious not about acute discomfort, but I have not had a decent sleep for ages and am taking too many paunkillers which dont work anyway… I am sorry that others are experiencing the same thing and will keep you posted!


Hi Maggi
Thanks for your reply. My joints and muscles have eased up a bit since my first post. It’s bearable now but sometimes in the night I hurt all over. I have tried the antihistamines and can’t really tell if it has helped or not. Perhaps I’ll give them another whirl. Nothing to loose. Couldn’t get to see my GP and was referred to a physiotherapist who suggested I change my shoes and put some supports inside. Well I didn’t even consider that one. I got some strong painkillers when the pain is really bad. Took two at the weekend and slept like a baby for 12 hours straight. Wonderful. I have number 12 tomorrow so only six more to go.
Good luck to all those out there with aching joints and may the pain go away soon.

hi, i have bee having herceptin for years now intravenisly but it was making me feel really washed out so i was put on the sub cut , i have had three lots now and each time i have been floored , aching limbs ,fever ,cold chills very bad fatigue its lasted for abot a week but when i mention if this could be the side effects im told it canot be the herceptin , im seeing my doctor soon as its distrupting my life at the moment .

I do wonder why do many specialists are in denial about the side effects of Herceptin. Surely common sense would dictate that so many women aren’t making this up. I’ve had a really bad sore throat since my last dose. No other symptoms that would suggest a cold or the onset of flu. I’m not even going to mention it on my next visit to the oncologist. I might however leave a list of side effects listed by the manufacturer!!!
I feel so strongly about their denial. It makes me so mad I want to scream. All I hope for is after my last treatment things will settle down.
To Jan15 I can only empathise and hope they manage to get you sorted out.

I had my 2nd herceptin injection about 10 days ago and am finding I feel quite strange. I can only describe it as feeling of mild lightheadedness and nausea. I’ve checked my BP and this is OK.  Had this after the first one but it seems more intense this time around. Also seem to have no concentration. Did anyone else feel like this?

I have had 2 Herceptin injections and due my 3rd on Thursday. I have had a runny nose and really bad sciaticaish pain in my legs, have constipation and am always have low energy…   I’m 56 years old and have 16 more injections to go. Reading all the post below have scared me. 

it exists. dont take any more of this nonsense, hope you have been able to move on since this post! x

Hello there Wales 786
I thought herceptin would be a breeze after FEC-T chemo. How wrong I was. I’ve been advised in the hospital to see my GP. Well that’s a joke, trying to get past the receptionist is a hurdle in itself in my surgery where it is run entirely by locums. So for my aches I self medicate with an anti inflammatory about three times a day. Seems to work for me. When I can’t sleep as seems to be happening with some frequency I take an antidepressant which was prescribed to ease the burning sensation caused by the chemo going into my tissue instead of where it was supposed to go. I also take a couple of co codamol just before bed if I’m really struggling. Can’t take too much co codamol because of its side effects-constipation.
Herceptin seems to be a necessary evil and it also seems we just have to get on with it. It does seem quite daunting early on in the treatment but all I can say is keep nagging to your care team although all I get is sympathy and no practical help with the side effects. I do find myself forgetting what I was about to do or say but maybe that’s more to do with my age than the treatment.
Best of luck and don’t be scared. It will soon be over. Well that’s what I tell myself.

Can’t wait to hear how you get on. Anti histamines didn’t do much for me either.

Thanks Blueash for the link to the film. I watched it and think I blubbered all the way through it. I guess in the grand scheme of things a few aches and pains are a small price to pay knowing how effective this drug is.
Many thanks again.

I’m due to start Herceptin tomorrow and I’m dreading the aches but as you say thankful that’s it is available. I love walking so really hope it’s not going to interfere with that.

Hi there.
Good luck with your treatment and who knows you might be one of the lucky one who escape these side effects. Be positive. I didn’t start to notice side effects straight away but I do think being as active as you can be must help if only on a psychological level. I go to the gym and occasionally swim and I feel good afterwards. Good that I’ve made the effort and it is an effort some days. Get yourself an exercise buddy if you can. You’re more likely to make the effort then. I’ve got only four more treatments and can’t wait to be done with it.
Best wishes. Pam

Hi Yorkie.
Thanks for your words of encouragement. Slept for 12 hours last night and only stirred when I was hurting. I don’t drink as much water as I probably should. Drank 3 liters a day whilst on chemo and can’t explain to myself why I don’t follow the same regimen. I do get lots of fruit and regularly juice fruit and or vegetables.
I’m really pleased to hear the side effects go when treatment comes to an end. With spring and summer on the way I’m hoping to reclaim my body as I knew it and get out and do walking.
Many thanks again and may your health and well-being continue to improve.

Week 8 after the last Herceptin dose…this is meant to encourage others!

Following the week 7 message, thought i would post what a difference another week on makes.

I have stopped being woken by aching muscles, i no longer sleep with a pillow under my knees and for the first time in over a year i have been able to drive the car a distance, go shopping and visit friends without wanting to fall asleep! I can stay up beyond 10pm at night and i am begining to feel more normal.

Hope this helps. 

Hi. Thank you all.
I start herceptin on Friday and am worried about joint aches and breathlessness. I teach zumba and want to continue in some way. I have managed to do gentle classes after week 2 of chemo which i am half way through. Do people still drive Ok?
Are the symptoms temporary or for the full 3 weeks between treatments?

Hi Donna Fox
Firstly I think each individual reacts differently to the drug from what I’ve seen and heard. I’m 70 this year and my age might have some bearing on the side effects. For myself I’ve only suffered from aching muscles and fatigue. Usually by my next treatment I’m feeling ok. Of course then it starts again. But for the most part it hasn’t stopped me doing things like driving and going about my daily routine. I might do it a little slower but l do get there in the end.
They do say to drink plenty of water. I’m guessing if you’re teaching rumba you are well aware of the benefits of keeping hydrated. I’m also guessing you’re a lot younger than I am and probably a lot fitter which I’m sure is going to help and see you through the next twelve months. I wish you all the very best. I’ve got my 16th injection on Wednesday so almost at the end.

Thought i would just update those following this thread just in case anyone else gets the same side effects.  I know we are all different in our reactions, i found Herceptin tough going but are very grateful to have received it. I last wrote with an update at week 10 since my last Herceptin dose of 18.  I am now 12 weeks out. Between weeks 10 and 12 the aching and stiffness has gone just about completely which is wonderful. Strangely though, after begining to get less tired before, the last 2 weeks i have been unbelievably tired again and could have fallen asleep standing up!  The nurse tells me that is quite normal and its because your body is now trying to get back to normal.  Now the tiredness is lifting and i feel so much better.  My hair is growing quickly, i no longer need the loo all the time and i can sleep all night. Nails are still dodgy (that is the herceptin too, i was fine with chemo, they were just darker which grew out) but that is nothing. So if you are having a rough time, do bare with it.  Honestly, it does get better believe me. When you are in it , it seems for ever.  Good luck to all x