I’m interested to know if anyone is experiencing joint pain whilst talking Anastrozole? I’ve been on it around 14 months… I was fine for the first few months then started getting severe joint pain… predominantly my ankle’s achilles and knees. It got so bad that I spoke with my breast cancer nurse who told me to stop taking it for a month. The month is up but I only feel very marginally better… I used to be active doing squats etc but I struggle now to get up if I bend down… I can’t get up after cleaning behind the loo and have to now crash land onto the loo seat as knees hurt so much!!! I expected the pain to go once I stopped the drug.
Can anyone advise what’s gone wrong? Will the pain ever go? Should I stick with Anastrozole or change my hormone therapy pill?
Thanks so much for reading.
Ps sorry if I’ve posted in wrong category. I really struggled as to how this works.
x
I stopped taking Anastrozole due mainly to joint pain. I’m lucky to be in a situation where I’m a particularly low risk so my treatment team were ok with it and my Oncologist had discharged me by that time.
My joint pain started about 6 weeks in first and initially just seemed to cause old injuries to flare up which I was able to manage with Physio exercise I already had plus Ibuprofen and Yoga / swimming . Eventually however it was everywhere , I tried taking it at night instead of morning but that didn’t help much. It did seem to get easier for a few weeks but then worse again and after 5 months and a Dexa scan showing secondary osteoporosis plus hair loss I decided to call it quits - that was about 20 months ago .
I found there was some improvement in some of my joints after just 48 hours off it but my knees haven’t ever been quite same and recently I had an episode where all of my joints became painful . It’s now settling down again - I do feel that even being on it for a short time has changed something in my body , There are a lot of auto immune conditions including rheumatoid arthritis plus osteoporosis and other joint problems in my family history so maybe I am destined to develop some of them anyway - I’ve been lucky so far . It’s still much better on the whole most of the time than when I was still taking it .
My friend who was diagnosed a few months after me didn’t tolerate Letrozole for a be same reasons but she is managing ok on Exemestane . You could also see about trying different brands as some women have found that this really does make a difference to their symptoms . If you find one that agrees with you get your GP to put it on your repeat prescription. A tip we were given at a support group a few months ago is that if you are needing a particular brand it pays to go to a small independent Pharmacy who will order in for you if they know you will come back to them .The big chains buy in bulk whatever is cheapest .
Hope this helps.
I too had joint pain on anastrozole and changed to exemestane which was better, though this too was troublesome after about 4 years.
I’m on Anastrozole, have been for just about 3 years.
I feel 105 at times! I’m 61. I can ache all over and getting out of low chairs etc is horrendous and I can take an age to stand upright.
I find the pain goes in fits and starts - sometimes it’s better than others.
I have a chat with my oncology nurse before my 6 monthly Zometa infusions. She’s offered to change but I’m of a “better the devil you know” mind.
If I do get to saying that enough’s enough, I will ask to change.
I go to the gym - cross-trainer, light weights and a weekly swim. Doing nothing makes the aches and pains worse.
No advice or suggestions I’m afraid, just someone letting you know that here’s someone else who aches - lots!
Hi there. I found co-enzyme q10 (vitamin/antioxidant available in supermarkets etc) really helped with the joint pain I had on anastrazole. I do think that yours sounds more extreme though and wonder if you have been to your GP. You can’t assume everything is related to side effects. I had autoimmune disorders (hypothyroidism and coeliac disease) diagnosed after the two separate series of chemo I had over the years. It’s like the chemo brought things I was brewing up to the fore. It just might be worth asking your GP to screen for joint disorders.
All the best and hope you find an answer to it
Hi Splog
I have been on Anastrazole since July 23 and also get pain in joints exactly as you have described. My pain seems to move around sometimes its knees, hip and ankles then others its arms, shoulders and chest. Its so frustrating, as you say, to get down only to have to ask for help getting up or struggling to get up when no one’s around. I recently spoke to the breast team who sent me for a bone scan, which thankfully came back clear. I’m sure the team would get me changed to Letrozole or Exemestane if I asked but I’m of the same mind as you, is it better the devil you know? I cry myself to sleep sometimes with the pain, cancer has a lot to answer for. Sorry I can’t give you any advice but sending a virtual hug 
Hi there,
I started on Letrozole at the start of 2019 and managed a year, but that with the combination of Zolodex was too much to bear. My oncologist switched me to Tamoxifen which, in comparison, was a breeze. At that point I was still not through menopause. The ankle pain in particular was awful on Letrozole. Fast forward to April 2023 and Im through menopause so agreed to try again on Letrozole. Awful!! Could barely walk. Not knees so much with me…but wrists painful and get episodes of RSI at my desk job, even though only 2 days a week. After 6 months I said I couldn’t cope with ankle pain (walking like a penguin!) and switched to Extemasene which is more bearable for sure. The only trouble is, I think trying to walk through the pain, I damaged achilles tendon and now have achilles tendonitis. If you read up on this you will see that the healing process for achilles is very long and so I am hoping (and this is where we are similar) that if I continue with the physio exercises that I will eventually heal. I am banking on that rather than thinking this damage is permanent. If I were you I would start on those exercises for achilles (they do hurt but apparently that’s normal) and ask to swap to extemasene. But obviously that’s just my opinion, hopefully your nurse can suggest something too. Good luck…I feel your pain xx
I am taking Q10 and think it helps a lot
Thank you for sharing… it’s really not easy is it. I wish you a pain free future. x
Thank you for taking the time to respond… I’ve taken your comments on board. I also bought some Q10 tablets today so fingers crossed.
I wish you all the best xx
I really feel for you… you’re suffering too bless you. Thanks for sharing with me.
Keep going… you’ve inspured me to keep moving. I’ve also bought some Q10 tablets which seem to be helping some people on here.
Lots of love xx
Thank you for taking the time to reply… wow you’ve been through it… and various brands it seems! Ive just started taking Q10 coenzyme which orher sufferers have recommended. I will also take on board your recommendation for Extemasene. I’ve got to start back on the Anastrozole tonight as Ive been off them five weeks… I’m seeing my Oncologist in 3 weeks and I’ll see what he says.
I wish you al the best I rely do. x