Pre BC (and taking Letrazole) I had no problematic symptoms. Now painful knees affect my walking and my fingers ache.
I realise now the aches and pains I am experiencing in my knees and finger joints must beconnected (along with bad sleeping) to taking Letrazole, which I’ve been taking for 3 months. I know my recent bone dexity scan will show osteopenia/osteoporosis as I was diagnosed years ago with having signs of it, but no medication supplements were taken (stupid me) until i started taking Letrozole (now im taking Vitamin D and Calcium).
I’m seeing Oncologist soon, for 1st time after post being prescribed Letrozole and radiotherapy sessions, and expect my having regular Infusions will be talked about again to help my bones. I guess too Letrazole will be first choice medication because I’m post menopause and will need infusion.
I will take the medication and infusions if that is what is decided as being best for me as I would rather that than C returning. But… what can help with minimising/reducing/getting rid (I wish) the pain I’m experiencing in my knees and joints? Sleeping too. I sleep badly and never feel like its been restful. Sounds strange trying to describe but sleep is “heavy”. Dark. No nice dreams etc. Wake feeling crap (in fact go to bed feeling that way too!).
My family particularly see me from the outside. Looking not unlike I was pre BC. I can’t do what I used to do with ease - especially if involves walking. Even going away for a few days was so hard as walking hurt and made it difficult. I think family don’t understand as i look (from outside) like the old me and generally function like the old me but its the in-between bit. I walk but in-between steps its sheer agony and I’ve gone from being active to trying to keep up Similar with my fingers. They look as if working ok from outside but they ache a lot
My partner upset me. He called me lazy. He reckons he was joking (i dont) but why say it? He is fit and well - try swapping places mate! I still do everything like housework and cleaning, bit of gardening too, all the old me stuff. But when I’ve been tossing and turning all night and I occasionally lay in bed awake, an extra half hour after you get up, its because I don’t have to feel pain in knees/hands.
I’m going to stop now as I’m waffling on. Basically any advice about managing pain in knees and hands and getting a good nights sleep welcomed. I realise this is the new me and I need to move forward pisitively.
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Hi Bluebell
Sorry to hear you are suffering with so many issues . If you go to the Welcome to The Forum page click on Going Through Treatment ( I think that’s it ) then hormone therapy there’s a lot of info on there and you could post there too.
Some people have seen an improvement in their symptoms by changing the brand of their medication . As regards your issues with sleep maybe you would benefit from taking it at a different time of day. There’s still a slight possibility that your side effects might ease in a few weeks .
I would also reach out to your BCN and explain the problems you are having and see what options there are.
It sounds like you have a lot going on - as regards how you are feeling it really is about finding a new normal , even without the side effects you are struggling with you won’t be quite the same person as you were before. Maybe when your radiotherapy is done you might consider doing a Moving Forwards course - this helped me a lot last year . Also Mac Millan offer free counseling sessions .
Take care
Joanne. X
Sorry you are having pain in your knees and hands. I’ve had pain, while taking letrozole, that migrates from my shoulders to my knees and fingers. Then it will subside. When getting up in the morning, I feel achy in my knees until I start walking around. Sometimes I have pain in my left thumb joint (go figure) which comes and goes. Do you have weird dreams also? I always have a bottle of water on the night table for my dry throat as well. If letrozole reduces recurrence, I will make sure to take it, in my case at night. Hope you are feeling better! 
Thank you for replying. My dreams are heavy. I take ages to get to sleep and often wake for the loo. I too take my Letrazole at night-time. I’m not thinking of stopping it as benefits of taking it are greater. If Letrazole thought right for me I will continue. I’m seeing Oncologist soon. Bit unsure what will be discussed. Hopefully about my future around BC, results of bone dexity scan and whether infusion needed. Hopefully discussion too about the impact Letrazole is having on me. Someone said there are different Letrazole (brands) so i would be interested to know about that. Thanks again for responding. Take care.
Hi. Thanks for taking time to respond and your thoughts. I used to take Letrazole in morning but related feeling crappy during the day to it, so I prefer taking at night. I will look at the Forum page you mention. Interesting that different brands of Letrazole may impact differently, I will bring up with Oncolgist. I acknowledge early days of taking Letrozole so (big) maybe things will settle. The main side effects I believe are linked to Letrazole are aches in joints (hands and knees), sleep issues, a bit of brain fog and feeling a bit low (not totally due to Letrazole as felt low since diagnosis). I need something to do to get me out and take my mind of things i suppose - but what I dont know. Anyhow, thanks again for responding Take care.
I also have a friend who changed from Letrozole to Exemestane which she is finding preferable - but not completely problem free . Good luck with your Oncology appointment . Write down your questions in advance and take them in with you to make sure that you bring up all the concerns you have. You can also write information down so you don’t forget it - or if a friend or family member is able to go in with you they could do that while you are talking to the Doctor.
Hi. I’m a bit confused about different meds you can. I need Estrogen blocker meds, so how many are there? What are differences? Any better than another? I’m post menopause, have osteopenia/osteoporosis and had lumpectomy, lymph modes removed and RT for stg 2 BC. I feel because of my lack of knowledge I’ll end up accepting and doing what I’m told. I know it can be a postcode lottery - I’m concerned because of NHS cost cutting and funding being so tight it will influence what is prescribed for me in the way of treatment/medication. I want what’s right for me to get through this BC journey - I just hope Dr’s do too and right meds etc offered to me.
Hallo Bluebell22,
Sorry to hear you’re going through this. I’ve been on Letrozole for four weeks now and noticed the pre existing pain in my hands from carpal tunnel syndrome and tenosynovitis has got worse, osteoarthritis in my knees is also worse but my weight is also an issue with that, which I’m trying to address. I’m also having issues with sleep and odd dreams, headaches and dizziness.
Can you contact your BCN to raise concerns with her? From the Breast Cancer Now booklet on Letrozole it seems just about every side effect is possible, so some or all of us are bound to get some or all of them!
At least you have an upcoming appointment with your oncologist, take your time to write down all of your concerns and see what they advise.
I hope they can resolve some of these issues for you.
Hello, I too have started to experience pain with letrozole and I changed brands a couple of times in the beginning because of hot flushes (I’m 78!) now I’m on Accord but the pain is horrid. My hands are like claws when I wake up and when I get up for the loo I creep across the floor, bent double and looking/feeling 100. But it does wear off during the day.
I’m seeing my GP in a couple of weeks as I haven’t seen the oncologist at the hospital. Well I saw the consultant, who supervised the operation but he wasn’t forthcoming when I tried to discuss side effects. Just told me I had to have the bone infusions.
It’s grim I know but hopefully someone will come up with some solutions.
Hi just rejoined the forum after some months. Been on Letrazole since July 2021 and only after a couple of pelvic fractures and a spinal non trauma fracture was it admitted that for people with osteoporosis it was dangerous. I should have been prescribed the super Vitamin d tablets I am now on ages ago, and also I am waiting for an infusion. I notice that you have dry mouth. I use special toothpaste for dry mouths but my nurse prescribes gel for dry mouths which is very effective. To any of you who don’t have energy to do much, get a cleaner if only once a fortnight like me. I am 77 and was fit and dancing last year but now on two sticks when able to go out, although I do try and do bits of gardening. Best of luck to all you younger ones, at least when we are retired we dont have to worry about work and the pension does keep coming in!!
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Hi Joy. Thanks for responding. Wow and ouch! I am only 3 months on it and told on first Oncology appointment it would be 5 yrs and because i have known osteoporosis/osteopenia bone problems (wasn’t a problem like I feel now though with aching bones and joints) i would very likely have infusions. So I’ll find out more soon when i see Oncologist again.
So are you still taking Letrazole? You say you’re taking Super Vitamin D. What strength is that? Will i stop calcium tablets (1200mg) if i have infusions (3 yrs worth)? Know what you mean about changes - i felt happy and full of life. Now walking makes me ache (but i do it and fo not drive everywhere) and gardening hurts my fingers. What a sorry person i must appear. Some days, i am but I really try not to be old as its only a recent thing because of BC. Hopefully things will improve. Take care x pS. What strength Vit D do you take??
Hi, I had the same issue but I changed the brand I was using and feel so much better.
I now use either Accord or Bristol
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Hi, I have been taking Accord Letrozole since April 2020. Since I am old anyway, the aches and pains could be attributed to both! 
Hi, I am also on Letrozole I have been taking it for nearly 4 years now. I had 6 iv infusions of zolodronic acid over 3 years and take Vitamin D tablets. I had such excruciating pains in my leg joints when Ifirst started Letrozole and slept downstairs for 4 nights as I could not get up the stairs. My very helpful oncologist sent me to a rheumatoid arthritis consultant who did scans and said my joints were actually fine and the conclusion was that it was definitely Letrozole. I have carried on with this little tablet and over time the sharp pains got better but now bending my knees, especially after sitting down or first thing in the morning is really difficult. I feel about 101 ( I am 72) and my knee actually creaks when I use the stairs. I have tried various brands of Letrozole, some are better than others. I feel for you Bluebell 22 and others in this position. I am really lucky as I have a wonderful supportive husband. I tell my self it is only the Letrozole ( I am on it for 10 years) and without it - well who knows. I want to see my grandchildren grow up so I will keep on with this tiny tablet. Speak to your oncologist. Good luck and take care.
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You and I are close in age. I will be 74 soon and your remarks about the pain diminishing over time and your knees creaking, are similar to mine. Besides taking a vitamin d pill, I also take alendronate once a week for my bones. My doctor also wants me to take letrozole for another 7 years.
So many different medications. . The alendronate sounds similar to the 6 monthly fusions some have, in as much as what it does and side effects. How does an Oncologist decide what better for the individual?? My aches getting bad. Think i can feel hip pain now… Has to be Letrazole. I know no option really but lack of sleep, heavy dreams and pain do get to you. I know not alone but it’s hard. Anyone got sound advice about relieving aches (especially knees). Would be so grateful if anyone can advice.
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Ooops. Advise not advice…
Bless you Medication etc you are taking just like me. Infusions coming up. I know it must be Letrazole giving me side effects that include (worse bit) painful knees and hands. I hear crunching too, as well as feel it. And i agree if that little pill is fighting to keep me well then I should give it respect and be grateful, but its hard to somedays and I worry it will get worse. I have read people changing their brand of Letrazole but i worry will I feel worse if i change brands. Hang on in there and on to your hubby too. He sounds a diamond and very supportive. Xx
Oooh. Interesting Good to hear So have you tried 3 different brands of Letrazole? Did you go straight from one brand to another?? Or need a gap before starting the new brand of Letrazole? How/what do you feel is the difference?.
Sorry to hear your aches and pains are getting worse. I use my warm water bottle quite a bit on my back and knees and occasionally I’ll take one extra strength tylenol. Seens to ease the discomfort!