Has anyone found anything that helps with this? I have now been taking letrozole for about two years but this hasn’t got any better. Ibuprofen and paracetamol help but only after I have experienced the pains which seem to come at random.
I am feeling sorry for myself as I am supposed to take this drug up to mid year 2027
Seagulls
@Seagulls can identify, only been on Letrozole for 4 months and just changed brands as I was getting terrible headaches (virtually gone on new brand). I suddenly get those pains, in particular as if someone is ramming needles into my toes. Thankfully they don’t happen too often but they are horrible at the time. I hope you can get some help and some relief. x
Talk to your teams about neuropathic pain and treatments and or other aromatase inhibitors to help reduce these side effects and stay on treatment.
@Seagulls I am in the same position as you. Been taking Letrozole since February 2022. I’ve tried different generic brands and am on Femara now. Not much difference though. I need to take Letrozole for another 5 years. My knees are killing and I can’t walk. The pain is horrendous and I am thinking about switching to Tamoxifen. My oncologist referred me to see a rheumatologist but he prescribed naproxen. I am not happy to take it as I need to take omeprazole for my stomach. I am on so many drugs that I don’t need to be on a drug for which I have to take another one…it’s just ridiculous. I am seriously considering changing to Tamoxifen. We need to weigh the pros and cons of course but at the moment my life is really suffering and I would like to be able to go on long walks with my kids like before and do normal stuff and not be in agony all the time…
I’ve tried acupuncture for the pain but unfortunately, I don’t think that it’s making much of a difference…
Take care. Xx
I can sympathise, I find excersise helps a lot during the day keep moving, when I go to bed is when I feel it most, no easy answer I’m afraid been on letrozole for two years. Xx
Thanks to everyone for your suggestions and moral support. I have taken it for over two years and I manage the pain with ibuprofen but recently have read ibuprofen has some unwanted effects. Luckily I have forgotten what these are!
I do loads of exercise in the garden as I have really stepped up the composting, weeding, pruning, watering and planting. All of these involve stretching, weight bearing, moving from side to side, and not thinking of anything else while doing these things.
I am also doing my mum’s tax return and my own and shredding paperwork which again is good mental and physical exercise although dare I say it is taxing to my mental health.
I went to a recovery group organised by Breast Cancer Now a couiple of months ago in my area. It included a session with an oncologist answering questions on cancer treatment. He said that all the aromatase inhibitors work in the same way for post menopausal women or women who are taking hormone suppressing drugs. Letrozole lowers oestrogen the most, the others do it to a lower extent. The side effect of pain in joints is due to low oestrogen. So I could try exestamine or the other one with a name I can’t remember. I took tamoxifen when I was diagnosed last in 2003 and didn’t like the side effects of that either so I can’t say I’m keen to try it again. I had a metallic taste in my mouth and worried about uterine cancer as my mum’s next door neighbour died of it so there’s no chance of changing to that one.
Sorry I just need to either come to terms with it or stop taking it, or take another drug. So I have options although I seem to prefer moaning and asking others to reflect on my moans!
Seagulls
Anastrazole , which is what I’m on .
The current brand causes some joint ache but I can live with that v the nausea and vaginal side effects .
I heard letrozole is “stronger “.
Exemestane can affect your white blood count 
.
Tamoxifen for post meno isn’t the recommended and can cause eye problems and womb lining thickening , neither of which I fancy .
It’s great that we move and do physical activity but I think balance with yoga m/pilates and perhaps swimming that provide support for our body weight and the ligaments and tendons that support our bones .
That’s what the royal osteoporosis society recommends.