I'm just wondering if anyone else has had side effects from these tablets. I'm to take them for 10 years & I'm having all over body aches! Any suggestions would be appreciated.
Take care, x
There are many of us here familiar with Letrozole and the side effects taking it produces.
The aches and pains in joints and your body are very common.
I was on Letrozole for about a year, prior to that it was Tamoxifen.
I found it very difficult to be honest. I didn't realise fully that it was the meds either for a while. But I spoke to my oncologist who suggested I change to another one and see if things improve.
I began Exemastane last September, so far, things have slowly improved, as in not as bad as they had been. I still have horrendous aches and pains, just less.
How long have you been on the meds now? I would suggest you speak with your oncologist and explain how things are. There may be an alternative suitable for you.
I have been learning to do life 'little and often' not all in one blitz. I try and rest my feet and legs as much as I am able, with them raised off the ground. Unfortunately I don't have a magic remedy to suggest. I take pain meds, to cope with the pain, sometimes it doesn't always work. As much as resting I do also try to keep moving each day. Getting up off the chair, or out of the car for example, is becoming a little easier. I don't have to brace myself as much as I did previously, except if I am in the same position for a long while then I do.
I am not sure whether I am sounding helpful or not! I am sorry.
I guess many of us are just trying to live with it, knowing the alternative might have been worse. But it is frustrating when quality of life has been diminished, that is when I have to find a new way through it.
You are in the right place here, to find support, and understanding of your situation. Welcome to the community.
Hope to chat with you soon,
hello my Sister has had the aches and pains she’s on this medication
she was put on it for 10 years her hair has got a little thin as well but
every one reacts to medication in different ways maybe you should
ask professional help.
Just wanted to let you know we have a lovely oncology nurse on here @LizzyB73 who I'm sure will be able to advise you further on various medications and their side effects.
I tagged her in this discussion so she'll be able to see this, but feel free to look at her expert page down below in the meantime:
I've been on letrazole for a year and pleased to say I've had no side effects whatsoever. Sometimes changing to a different brand can help.
I always take mine at night time.
It just shows how different we all are.
Hopefully things will improve for you.
I have taken Letrozole for 3years. I do have pain but it was a lot worse when I started taking it. I’m sure it doesn’t help that I’m about a stone overweight too so my knees take a bit of a bashing! I used to take any brand my pharmacist had in stock when I gave her my prescription which meant changing brands every time. I gradually realised that the pain was less when I took Cipla brand (a manufacturer based in India, they make very cheap generic medication for people of their country who find it difficult to afford properly branded medicines). My pharmacist, Lloyds Pharmacy, went out of her way to find that particular brand, even phoning India for me, and now that’s all I take. Other people I know have said exactly the same but have settled on a different brand. Maybe you could experiment with a variety and see which suits you best? Good luck with it.
I’ve been taking Letrozole for just over a year. I’ve noticed a thinning of my hair and I do have aches and pains. I try and use a magnesium spray or cream I made which helps a little. I’ve learned to listen to my body after having had a previous cancer that involved lots of chemo, stem cell transplant and radiotherapy. Just had surgery and radiotherapy for breast cancer last year which although sounds crazy I was relieved about.
yes I’m struggling with joint ache. I’ve been on letrazole for 18 months. Tried coming off it for a month on the advice of my Macmillan nurse and it improved slightly. I’m back on it now though as although painful it’s not totally debilitating and I didn’t want to try anything else. I guess ‘The devil you know.......I used to do yoga regularly and I’ve started gently again and that seems to help a little. Xx
I have been on letrazole for eight years and have joint aches/ pains, fatigue, nausea, dizziness and very thin hair.
I don’t know which are part of or separate from previous cancer treatment including a bone marrow transplant. The cancer related fatigue doesn’t seem to be lessening. There is partly a boom and bust cycle but it can also come out of nowhere. Even on the very best holidays, I have to pace myself carefully.
i think I have tried every hair thickening product in existence but nothing has made any noticeable difference. However, I’ve always had fine hair and this was the fourth time of losing it. It didn’t grow back curly either!
I saw this Question posted and breathed a sigh of relief! I am searching for an answer as to why my body is aching so much, my feet and hip hurts when standing or climbing out of the car, It can be so bad I am unable to put any weight on my feet, so I hobble. Some days are definitely worse than others. I have mentioned this to my Oncologist, my Breast Surgeon and my GP, the general consensus is that I am getting older anyway so it could be a little bit of Arthrtitus, or it could be Plantar fasciitis for which I have spent loads on Amazon buying bits and bats to ease that. More recently though I am experiencing whole body aches and pains, there isn't a pain killer I have tried that has made one iota of difference, I feel miserable and sore. I again rang my GP and insisted that she change the brand of my Letrazole, I was taking CIpla, so she renewed my prediction and I rang around all the pharmacies to enquire what was in stock. I am currently on day 4 of Dr Reddys (?) My GP wanted a blood test to rule out any other underlying issues and it was found I had high cholesterol and an underachieve thyroid, both of which can cause aches and pains. I am also on Day 4 of Levothyroxine. My aches and pains have so far lifted, but this is nothing unusual they came and went prior to this change.
I do believe that the baking agents used on different brands of Letrazole can negatively affect some patients, so please try out different brands you may just find one that suits you.
Also, be your own self advocate and continue rattling the cages of your Dr's yes, you are taking an anti cancer drug and the other option would've been a lot worse, but by no means should you be in constant pain and not enjoying the quality of life you deserve. Keep questioning and best wishes.
I have been on letrazole for 2 1/2 years and suffer pains in my limbs and joints. I also suffer from extreme fatigue, dizziness, memory problems and difficulty in finding the right words in conversations (which could also be due to chemotherapy). I also suffer from neuropathy in my feet and hands which makes walking difficult and often giving me pains in my feet when in bed at night, and I struggle keep a hold on things (washing up is a challenge now). I also get extreme hot flushes (much worse than those I got during menopause) that last for several hours at a time and leave me with soaked hair and clothes and a very red face! When I talked to my GP all I was told was that a few hot flushes aren't difficult o cope with! Obviously a GP with no experience and no ability to listen ☹️ I didn't have these issues before cancer but I should be grateful that I'm still here.
I'm sorry for not getting back to read all your helpful messages!
I had Radiotherapy a few weeks ago & a session of immunotherapy the same week,but unfortunately it floored me. I ended up in A&E for the day,where I was looked after & the remainder of the week recovering at home.
In regards to the Letrozole my Oncologist suggested trying to exercise. In a study it shows that women who do,managed better. Easier said than done though,when you are in pain!!! I'm just going to keep on trying & I just wished I'd have kept up with my Pilates!!
Stay safe all,
Regards L xx
I was on Letrozole for a year. Lots of joint pain fatigue and generally feeling like a old woman even though I am only in my mid 50s. My oncologist told me to come off Letrozole for a month. Definetely felt better. I am now on aramosin for past 4 days and the headaches are nasty. Will battle on and see how I get on.
Oncologist told me there is a 3rd option if required
As I read your post I thought, are you me!!
Many of the things you have written I can identify with!
I am 4 years clear but the impact and ramifications of treatment and the medication have been harder in some ways than the treatment itself.
It was my oncologist who noticed when I hobbled into her room one day wondering if I had an injury. Upon finding out no, this is how I am now, said noooo, that is not a good quality of life after everything I had been through. She began to help me to find out what was going on. I was referred to Orthopaedics where I had xrays, MRIs. Some good, some not. From that I was referred to orthotics and fitted for a shoe insole later on. It turned out though that at some point I had fractured my feet!! I had no idea, except remembering one particularly painful episode, walking in town. I ended up having to wear boots for 8 weeks! The bone pain is a result of meds too, and I have changed from Letrozole to Exemestane. I have found it much better. I still have very painful feet and bones, but not as extreme. I have to be mindful about what I do these days. I am not always sensible and often overdo it, then I pay for it.
The hip pain is still an issue, I do have dexa scans, but not since covid. That checks my bone density. I do take calcium, adcal daily.
I don't know if any of this helps, just to say, you are not alone in it!!! There are so many others here who also struggle with this or very similar.
I hadn't heard until recently about trying a different brand of meds, that may be something to explore. Also try taking it at a different time, some say taking it at night helps.
If you would like to chat further, please don't hesitate to do so.
Have a good evening,
I have read all of your posts with interest and I have been struck at the similarity between some of the side effects you endure from taking Letrozole and those I experience. I have an aggressive prostate cancer which feeds on testosterone. I am on a hormone treatment called Decapeptyl which prevents my body from producing testosterone and stops the cancer from spreading . Side effects include hot flushes, forgetfulness, cognitive issues, osteoporosis, weight gain, loss of energy, muscle strength and aches and pains.
I try to combat some of my side effects by walking, gentle exercises, resistance bands and studying Spanish.
It is good to know that modern medicines and treatments are so effective in controlling cancer, but most of us have to live with uncomfortable side effects. I found it very difficult to cope until I found the lovely Live Better With Community where I can chat with people who are in a similar situation.
I am currently 2 weeks into taking a different brand of Letrazole, this is Dr Reddy. I am also two weeks in to taking Levothhyroxine for a recently diagnosed under active thyroid. I still have the pain, but no where near as much as I had before. Once bitten, twice shy I think I will wait for the full month before I can truly say whether the change of Brand has helped.
I do wonder though how long Ive had an under active thyroid and what part this has played in the overall general well being of me.
Three weeks ago, I had the bi annual infusion of Zometa, initially I felt ok, but boy or boy did I start to feel worse, I know this is a subject for a different thread, but I wanted to mention it, just in case you have this infusion and forgot to notice the side effects of it.
Its a constant juggle these days, I think my GP is even confused by my constant symptoms.
Wishing you all well..
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