I think I’ve been a bit naive (or single-minded in my dislike of HT). I have quite bad joint and muscle pain now but I have been off HT for over 2 weeks and the pains continues to worsen. The pharmacist has suggested it might be caused by the zometa infusion. Looking back, I can see that the pain began quite soon after my second IV but I changed brand of anastrozole at that time and have assumed it was that. In the last month, it has become quite a problem and this ties in with having had my IV in mid-January.
Has anyone else experienced severe joint and muscle pain (initially hands and feet, now knees, elbows and hip) as a result of zoledronic acid IV and have a solution?
Is it something that goes away after you stop the treatment or permanent damage?
Obviously I’m reluctant to stop the therapy halfway through as I’m quite high risk for another 2 years but I really don’t know how I can function like this for three more treatments over 18 months. I was very sprightly before all this BC treatment took its toll I’d love to hear from others how they’ve coped x
Darned frustrating trying to work out what side effect is from what meds?.
I had the infusions when I was having chemo but was changed to the tabs once chemo was completed. I didn’t suffer any painful side effects when on the infusion but have noticed that I have a terrible ache, not quite painful but certainly very uncomfortable, down my left shin, a painful left hip and right shoulder?. Spoke to the bcn when I had my appt but she dismissively said ‘yeah that’ll be the letrozole’ but then followed it by saying ‘we see you next in 2 years when you stop the chuffing horrendous bisphosphonate?’, not filled with positivity after that but she wouldn’t elaborate any further after that, just kept saying we’ll see you in 2 years, the onus is now on you to check for recurrences and phone us if you notice any differences?
I guess your pain maybe due to the infusions, did you notice whether the pain is worse after the infusion but then starts to taper off the longer between infusions you go? If it does you may have a link between the 2.
Sorry I can not be of any more help, but I am also intrigued as to others experiences and hope things settle down for you.
I had my first Zometa infusion two weeks ago, about the time I changed from Letrozole to Exemestane.
I’m almost 63 indefinitely post menopause!
I was in a lot of pain for the first two days and felt very sleepy, then felt fine until a just over a week ago when the aches returned. They are not nearly as bad and I’m up and doing, but my legs feel like lead and my feet, hands, back and arms ache.
I spoke to the BCN who said its more likely to be the drip rather than the exemestane, and it will improve over time. I didn’t want to think that this is the new normal!!!
I’ve read a lot of posts by women who say the first one is the worst and they’ve had almost no side effects with subsequent treatments. I’m going to persevere - were so good at that aren’t we?! - as I feel it will benefit me more to have the treatment than not.
As to a solution, I’m just going with it. I’m resting when I feel I must and trying to be active when I can. I’m trying to go for a short walk each day (not always up to it) and trying to do some of the physio exercises.
Thank you for your post. I feel less like I’m the only woman on earth whose side effects are dragging on a bit!!! xxx
Please can I ask how your side effects are re the zometa IV as I’m due to get mine early July and am wondering how long the side effects may last, do appreciate that everyone is individual but like to be informed of potential outcomes!
I do hope you’re doing well, my skin is taking quite a while to get back to normal post rads (now 3 weeks since last one) so am enjoying a bra-free existence!
Sorry to hear about your joint pain but it all is sounding very familiar as I’m having the same problem. I had my first Zolendronic infusion in August 2019 & ended up in A&E with what I described as muscle spasms, joint pain. I was sent home but struggled with knee, hip, joint pain for a couple weeks.
I had the second Zolendronic infusion in February to see if the side effects would be as bad, they were not, however, I, like you am suffering from constant joint pain. In the last couple of weeks I began to worry that it could be bone pain. I have now had a bone scan & am waiting on results.
I think its the Zolendronic Acid & if bone my scan is clear I will probably be stopping it. I cant answer your question yet as to whether the pain will go away when the infusion stops but I do hope it does. I am just glad to know I’m not the only one with this pain.
Just a word of encouragement to all you lovely ladies.
I’m 4 drips down, 2 to go, and taking aromasin (exemestane).
My wonderful GP has suggested wearing a splint at night for the pain in my hands and the trigger thumbs, which has really helped. I’ve even managed some hand embroidery this week!
She diagnosed the very painful right upper arm with restricted movement as a frozen shoulder and has given me daily exercises to do. I can undo my bra again!
She also assured me that my body will get used to the drugs and the pain will get easier to cope with.
I’d got to a point where I’ve needed meds for anxiety and panic attacks. All I could see was pain stretching out before me for years. These simple steps recommended by my GP have made me feel so much better, physically and mentally.
Hoping this helps someone out there.
Hope we can all find little precious moments of joy in life today.
I’d love to hear from others how they’ve coped x