Letrazole & “noisy” joints

Hi - I’d be very grateful to hear if others are struggling with “noisy” joints! I am having terrible trouble with cracking & pain in most of my joints - the cracking can be heard from the opposite end of the house some days which can be quite alarming.

For context I was diagnosed with mixed ductal & papillary carcinoma in March 2021 - 30mm, HR2 positive, Stage 2, Grade 3.  I had a wide local excision & sentinel lymph node biopsy which was followed by 3 sessions of EC & 3 sessions of Docetaxel chemotherapy finishing in August 2021. Cold capped throughout but still lost approximately 80% of my hair which has since grown back very quickly. This was followed by 5 sessions of radiotherapy along with the standard 18 three weekly Herceptin injections which I finished in July 2022.  I have had four out of the six Zoledronic Acid infusions I am due & seem to tolerate that quite well - very stiff & quite painful bones for a few days afterwards but all doable - last one due January 2024.

I am however finding the Letrazole very challenging - I have managed to get back to the gym two or three times a week & walk an average of five miles a day but still my joints give me trouble! I started taking Glucosamine Sulphate as after a short while on the Letrazole as I struggled to even put my coat on as the pain in my arms and shoulders was so severe - until the last few weeks this was an enormous help, however, I now feel like I’m back to square one. I feel like I have aged 20 years on these tablets and would like to know if anyone else is having this problem.  

Many thanks & good luck to everyone on this journey.

Dear CShep

You are you having a tough time at the moment  I’ve never heard of anybody who’s joints are actually making cracking noises being in so much pain it’s just not acceptable. I think you need to contact your breast cancer team or maybe your oncologist and ask them to see you, as you can’t go on like this this is a very poor quality of life.

Letrazole, seems to you have a lot of side effects sometimes the pharmacies can change the brand, which can may make a difference apparently, it’s the way the meditation is mix (so I’ve been told).

Wishing you well going forward please keep posting and let us know how you are getting on.

big hugs Tili :rainbow: :rainbow:

I know how you feel, at 63 I feel suddenly very old, after 18 months on letrozole, any injuries take months to heal, including one to my foot which is keeping me off the hills as the pain is so bad. I decided to try taking up horse riding again, but even off a mounting block I can barely swing my leg over the saddle and almost went head first over his shoulder in the process. I am utterly fed up with this.  

Given that it takes about 3 weeks to get a doctors appointment, and I’m due to go on a gentle walking holiday in 3 weeks, but the tendon pain in my foot means I’m going to spend most of the holiday sitting it out and waiting for everyone else to return. i’m Wondering if it would be ok to simply come off this for a few weeks and see what happens? 

Your post resonated with me. Six months on Letrazol and my hands are so painful I can’t open bottles or doors. My feet and knees very sore too. Hot flushes every 30 mins. Utterly miserable. Have an apt with my surgeon next week to see if I can swap to Tamxoifen. I am just 60 and feel terrible. Surely this can’t be it?! I feel for you, did you take a break? I am seriously considering it too. Or take half a tablet? Can’t feel this bad any longer. With love to you all going through this x

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Hi hebe - yes the painful joints are hard going - I’m a similar age to you at 61 and it’s hard to know what’s due to the meds and what’s due to getting older.
I haven’t taken a break from Letrazole - I checked with my GP that my noisy joints weren’t due to arthritis and I’m now “cracking on cracking on”! I find some days harder than others but I am mentally trying to make peace with having to take this for another good few years yet (almost two years over). I didn’t feel able to start on a different drug as I wasn’t prepared for yet more unknown side effects but it was something I seriously considered.
I wish you all good luck.

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Hi hebe welcome to the forum ,certainly worth trying Tamoxifen not nearly as hard on your joints and bones , still as bad with the hot flushes though unfortunately :hot_face:

Thank you, after yet another night of no sleep because of painful hands and feet, I am hoping to speak to my breast surgeon and see if I can switch. I can’t sustain this. So grateful to be able to chat on this forum and know we’re not alone. Xxxx

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Thank you, not sure I can sustain this anymore to be honest. Love to everyone on here. Xxx

Hi, Yes I also have noisy joints from being on Letrozole. My knees give a creaking “eek” sound when I climb the stairs. It actually makes me shiver I hate the sound so much. Have been on Letrozole for 3 and a half years now and the painful joints started about three months later. Oncologist very good and I was sent to a ruimatologist ( spelt wrongly I think). I slept downstairs for 4 nights in the chair as my knees were so bad. Had scans etc and had no arthritis. I have carried on with the Letrozole and the knee joints did improve on their own but now I creak .My elbow feels like I have spent the night hitting it against a brick wall. So many side effects, too many to list here but I have decided it is better to try to live with the side effects for another 7 years than not be here at all. I want to see all my four grandchildren grow up. Take care everyone.