I had my first infusion of Zometa 7 weeks ago and I am taking Letrozole every night. I am attributing my increasing muscle, bone and joint pain to the Letrozole. Had no idea to check the Zometa until moments just before looking at this forum. I have a couple of friends that had to get off of the Letrozole because the pain became unbearable. My BCN recommended a daily dose of Claritin. It does help.
Eventually after having one of those webcam? calls with the GP, he said he didn't know what it was so sent me for an xray. " weeks later had the xray with a further 10 day wait. Phoned the surgery for the results - all normal, spoke to the doc who said he wanted to see me so he could look at it🙄.
Diagnosed with both tennis and golfers elbow - tennis on the left and golfers on the right. Ironic it's named after 2 sports I don't like🤣. Now going to have virtual physio because they aren't seeing anyone in the flesh but my doc wants me to start some exercises asap. He was going to prescribe some more anti inflammatory but I said I don't want to take any more meds, there's always a trade off and I'm not sure I want anymore side effects😬.
Any way I'm quite pleased at the diagnosis in that I thought it was side effects from the letrozole, zolendronic acid or worse.... actually turns out to be repetitive strain injuries from working from home and doing too many extra hours without enough down time inbetween🤣🤣 even though it's down right painful I'm just grateful it isn't anything worse.
Onwards and upwards ladies
Hi Ladies, thank you so much for your posts. It has been really helpful reading them. I had my first zoledronic acid infusion on Friday and was totally wiped out over the weekend with a temperature of 39.8 and weird pain bizarrely at the base of one finger. I am feeling better today but still excessively tired. Hope you are all doing ok. Hope you managed to get to your GP Joemic. I saw mine yesterday to get an inaccessible tick removed. That had not been in my plan! Xx
Hmmm, just wondering🤔 on one hand I had no problems with the Zometa infusion, well that's after my veins played ball, they kept blowing😳.
A couple of weeks later and my elbow is painful, not the joint, the actual bone. I'm losing strength in my hand and keep dropping stuff. Just wondering if it's a coincidence or the Zometa.Have any of you ladies experienced this?
I suppose I'll have to ask my gp, if I can get past the diagnosing receptionists that is😂
I had my bisphosphonate last Weds and despite feeling like death on Thurs & pathetic Fri feel ok today...and I do think its actually improved some of the joint pains I had (thanks to Letrozole), my knees in particular are much improved on an evening post taking my 7pm letrozole. I do hope this isn't just a short term improvement but am also really glad that I didn't get the side effects that some of you have been writing about and really hope things get better.
Never ceases to amaze me the different effects these blasted drugs have on us!
Right back to my 4th pint of the day in my local spoons....
Thank you so much! You’re right, you think you’re the only one going through this. Things became so painful that I had to ring the breast care team and a month ago I was taken off my exemestane. Yesterday, I was at the hospital - they have put me on tamoxifen now and sending me for a bone scan. I was in so much agony, I had to crawl up the stairs and just couldn’t manage. I have osteoporosis which they think has been made worse with all the treatment. I can’t do my job at the moment - I simply can’t function normally! On a positive note, I’ve had another mammogram and ultrasound and there’s no change since my last one in November last year. All clear! Just wish to goodness I could be ‘normal’ again. I have a bed guard now just so I can turn over in bed - something to grab onto to help me sit up etc. I was a 51 year old working mum with 2 dogs that I used to walk miles with each day - to a 53 year old who can’t work at the moment and whose dogs are still living at her 82 year old mums house because she can walk them further than me!! It’s so upsetting. I wish you well and do keep me posted. Thank you
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.
I hope this info has helped.
Hello ladies, I'm really sorry to hear of the bad side effects you are having but, just to add a note of cheer for new starters, I seem to have been lucky with zol acid. I had 2 doses during chemo last summer then a 6mth dose in January and fingers crossed so far have not noticed anything, just a bit tired for day or so. I did get joint pain from the filgastrim injections during chemo so I sympathise with those of you still getting pain. For the record I'm 65 and on tamoxifen. Love Mo x
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!
Thanks Sam X
I had leg pain, especially knees, but it improved a lot, so hoping yours does too. I use my hands a lot - sewing, crochet and an allotment - and the joint paint in my hands is the worst to cope with. After 2 1/2 months it's not improving but I travel hopefully! I will def let you know how my review goes. Xxx
Hi, thank you so much for your reply. I’ve woken up this morning feeling slightly less achy - but my thumbs??!!! What on earth has happened to them? I can’t even fasten my bra!! The pains I’ve had in my legs are identical to the pains when I was on letrozole and that’s why they were changed to exemestane. I back to crawling up the stairs again. Tomorrow is another day and if the sun is shining, the pain becomes easier to bear. Once again, many thanks. X
Poor you! I feel for you.
The first two days after zometa I felt very sleepy and aching all over. Then I picked up for a week, then the aches started again. I spoke to my BCN who said it was probably the drip and it would subside. I changed to exemestane around the same time as I had the drip. I'm still aching, in my arms mainly. I get the golfers elbow you mention! Also struggling with my finger, thumb and wrist joints. The BCN now says this is probably the exemestane. I have a review in 2 weeks and they may change my meds again. I'll let you know if they do and if the symptoms improve.
In the meantime, hang in in there! Do what you can, rest when you can, and ask, ask, ask til you get an answer you can live with. Thinking of you, praying for you. 😊🙏💚 X
I had my first zoledronic acid infusion on Wednesday and I can’t believe how much pain I’ve been in. Side effects kicked in around 10 on that night. I couldn’t move off my back in bed, while I was being sick. Trying to move ever since has been agony. I felt like this on letrozole and was changed to exemestane. Every single joint is really really painful. I am spending my time upstairs as I can’t bend my knees properly to get down the stairs. I am taking additional codeine but wow I never expected this. I’ve also got toothache. I had a raging fever the first night which subsided by lunchtime the following day. How long do these pains usually last. My elbow joints feel like I’ve got tennis/golfers elbow and my mouth feels coated. Have others experienced anything like this? Are subsequent infusions as bad?
I’m 53, had a lumpectomy in December 2019, lymph nodes removed in January 2019, followed by 6 chemotherapy cycles and then 15 radiotherapy sessions. It seems I’ve reacted badly to everything concerning the cancer. I really don’t know if I can cope with going through this treatment again in 6 months time. I’d be really grateful if anyone is able to offer advice. Many thanks
Yes, we'll all have different experiences but you're right, it's helpful to know someone is empathetic.
As I'm over 50 I take a B vit supplement every day. I have a plant-based diet so it's doubly important. So I know it's not that for me. I'm glad you've got a good GP. It's so important as they are our first line, aren't they?
I think we have to expect some side effects but not put up with horrendous aches and pains. At the moment I'm just trying to be content until I feel I've reached a point for intervention.
I hope your symptoms subside soon and you feel more like your usual self again. xxx
Thanks for YOUR post. The thing is, we know everyone is different and everyone’s experience will be different but there’s always the hope that someone out there will recognise our experience. My first zometa was given with my second EC treatment and I was always so ill that I just didn’t notice! Certainly I had no muscle or bone pain in the first 6 months so that may give you hope. There’s no reason to suppose you’ll share my experience - and I don't even know if I’m right. I’ve seen a great GP now and he’s testing me for X, Y and Z with a view to treating the symptoms at least - but we’ve already established my B12 level is low and that can cause symptoms like this so maybe I’m pointing the finger in the wrong direction again. I’m just a bit desperate lol.
All the best for your treatment x
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
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 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