Hi, I’m just about to start on letrozole and my oncologist suggested it may be worth taking a glucosamine & chronroitin supplement daily. She said it can be effective at easing joint pain and is safe to take whilst on letrozole.
I’ll let you know if she’s right once I’ve been taking it for a while!
Oooh. Thanks for info, definitely will try myself. Just pray aches in fingers and knees doesn’t spread. Take care 
x
I was diagnosed Feb 2020 and was on way for surgery on 23/03/2020 when I got the call to say surgeon bwas self-isolating. Boris announced lockdown that afternoon band my surgery was postponed indefinitely. I started taking Letrozole next day Finally got surgery 01/06/20 orig tumour had shrunk by almost half but they did find DCIS nearby also. Had to come off Letrozole after about 15 months as I was in so much pain i could barely function. Even the simplest things were incredibly painfu. When I had 1 year post-surgery conversation with BC nurse I told her and she suy I stop taking it. After 3 weeks the difference was incredible. I have now been taking Tamoxifen for over 2 years. I won’t say it is without its problems in fact the menopause-like symptoms are worse than the ones I had during my actual menopause. I have quite a few other side effects too but definitely easier to live with than the pain I had on the Letrozole. So, I know you are not lazy or making it up!
Some of us react in one way to these treatments and others another way. Perhaps a switch may help you. Worth a try maybe?
What were your symptoms with letrozole? I have severe depression, shooting pains in my fingers, ankles and knees and hot flushes. I went through the menopause with none of these symptoms, although I did have fibroids so had heavy bleeding for years towards the end of my periods which stopped when I was 54. I am now 68 and feel like an old lady of about 85 except for having menopausal symptoms on top. My husband has got a surgical boot on and so I have lots of extra work to do the garden, pruning and mowing and scything the meadow, walking the dog three times a day minimum, doing all the cooking and cleaning and clothes washing, driving as he can’t drive for 4-6 months. The dog got bitten by an adder on the same long walk so there’s administering the dog’s meds on top, plus making sure her foot is healling well. I am selling my mother’s house too which was meant to go through today after nine months but a new solicitor is now involved in the chain so nothing’s happening. The fees of her nursing home are £1750 a week, she’s been assaulted there by another resident and the care is minimal despite the costs. They said mum was on end of life care which seems to consist of ignoring her. I queried it all and it was found she had a urinary tract infection with a rare form of bacteria so once that was treated she looked a lot better. But there’s little interaction with staff who don’t seem remotely interested in talking to residents, just wiping botttoms and stuffing food in the other end. They get paid a pittance and the companies make lots of money. I have looked after my aunt, my mum, my dad and tried to look after my alcoholic brother (still drinking) and my alcoholic depressed husband (no drink for last 7 years) and I would like someone to look after me. Moan over. My latest idea is to go cold turkey as far as cancer treatment is concerned. I have strong bones due to oestrogen. Why give myself other conditions that weaken my bones and have other bad side effects such as increased risk of heart attacks. The leading cause of death in women are heart attacks and Alzheimer’s. No one seems interested in these - in fact you don’t get funding for care if you have Alzheimer’s despite its drastic impact on your ability to live independently. That’s not fair is it? Seagulls
Hi,
I was diagnosed with ER/PR+ HER- breast cancer last year in June, followed by bilateral mastectomy and reconstructive surgery three months later. The nodes were not affected, and I had no radiation or chemotherapy (luckily for me). I have been on Anastrozole and Zometa every six months for the last year and due to severe joint and muscle pain, my oncologist sent me for a bone scan with results of mild/moderate arthritis and a Dexa Scan with results of osteopenia, then the oncologist put me on a 7-day break and changed the medication to Letrozole.
During the 7-day break, I didn’t feel any improvement, maybe it’s a short time for improvement. 3 days ago, I started re-therapy with Letrozole, and I have the same pains that sometimes I can’t walk. Actually, it’s not just my knees, but every joint in my body, even when I walk, I hear a click in my knees. I am thinking of asking my primary doctor about a handicap sticker since I am unable to walk from the parking lot to the building where I work.
My oncologist claims that the arthritis appeared due to age (I am 57 years old) and due to the wear and tear of my bones. I’ve never had this kind of pain before and I’m worried about what will happen to me when I’m even “older”.
When I asked what we would do next if I had the same side effects with Letrozole, I received the answer that we would try a third type of medicine.
Has anyone had such an experience of trying different medications?
I have tried all 4!
Started on Anaztrazole - horrendous pains in my legs, joints stiffened up, insomnia 5/7 etc etc. ONC changed me to Exemestane. Pains went but stiffness remained , insomnia now 3/7 . Had a drug holiday so that I could fly and navigate an airport (do you know how many flights of stairs there are in airports?!!) and actually enjoy a little holiday without the constipation. Then went on to Tamoxifen and finally Letrozole. Had to have Accord brand though as SUN really set the SE’s off again.
Climbing stairs on Anastrazole was practically impossible and I still have to run my hands under the cold tap first thing in the morning to get my fingers moving. All these have given me Osteopenia so on strong dose Vit D pills.
My aches and pains definitely came on with the pills… in fact the SE’s kicked in within 10 minutes of taking the first tablet!
Hi Willow. Sounds like you’ve had a really rough time. I so empathise about the joint aches and pains in my hands and knees. I had the odd aches before BC diagnosis but by God since starting on Letrazole 3 months ago they have quadrupled. I feel like my knees have been whacked across the middle with an axe. Driving no problem but walking oh my days! I grit my teeth (one knee is worse than the other). I hadn’t thought about airport, it must have been agony for you. I feel for you regarding sleep too. I eventually sleep (often 3am) but its not restful and dreams never nice ones. These two areas are my main/daily side effects. I’m worried if tablet is changed will i have worse side effects, which sounds was what you experienced. So… do i stick with Letrazole brand I’m on or ask if try a different brand or tablet even???
I know many will disagree but I feel decision making by OCN (and other some other medics) is in many cases based on cost - particularly medication.
Please… what do i say to OCN who i see soon. Do i stick with Letrazole?? Do i stick with brand I’m on or ask to try another brand like Accord or Femara (is that the same?). Joint aches (other side effects acknowledged) is clearly prevalent to those Letrazole takers. Please… what do you think i should do?
can you describe your constipation? I was told my GP couldn’t do anything about mine because it is tiny bits of poo on day one, followed by wind on day two, followed by loads of poo on the third day. This makes life pretty intolerable. I didn’t have any problem before letrozole
That sounds about right! So sorry the GP won’t listen
Anastrazole and Exemestane were the worst, but I seem to have got it back under control on the letrozole (though there are still difficult days) . I have loads of bran fibre on my cereal in the morning and try to keep my fruit and veg levels high.
Mind you what always sorts me out is a) chocolate and b) red wine 
Never fails!
Hi Bluebell22. Not sure I can help you there as we are all different and react differently to these pills.
It was my oncologist who did my pill changes , but it was after reading here about different brands (eg ACCORD, SUN , CIPLA etc) using different coatings that the GP practice said I could specify ACCORD on the prescription.
I went armed with my list of side effects for my first review to the Oncologist and it was she who changed me from Anastrazole to Exemestane as she didn’t like the SE’s I was having and also the medics know that if we find the SE’s hard going then we may just give up taking them, so fair play to being flexible.
I am not sure if it down to cost - at my Health Trust it was Anastrazole that is the default drug of choice… I think Exemestane is slightly different drug - does the same thing as the 2 other AI’s but does it differently. Tamoxifen is also a different thing.
I can only suggest, check with your ONC, and if you have to stick with one type of pill then try a different brand for repeat prescription to see what it’s like.
we have a no alcohol rule here as my husband is in AA but I would be happy to eat more plain chocolate if I thought that would help. My husband loves milk chocolate but I don’t really eat it at all except in Magnums and at christmas when I crack open the thin mints
Hi Seagulls
'Fraid I am a milk choccy gal. Liked the ‘Old Jamaica’ plain chocolate though, but you can’t get that anymore.
Talking of which, do you remember having laxative chocolate as a child. I seem to remember you had only a tiny amount and it tasted vile…
I am doing OK with the constipation at the moment, but going away soon and that always sets me off. (or not if you get my drift)
Hi Seagulls
I also had bad constipation as you have described it on and off but the last time it went on and on. Saw someone at GP (paramedic! not gp) and got prescribed a few things but ended up seeing a gp the next day and being sent immediately to hospital. Turned out I had diverticulitis and I was in hospital for 4 days. They sent me home with Laxido sachets, like Movacol, Cosmocol, etc and told me to take twice a day to start with. I now take one every other day on the advice of my oncologist and that seems to do the trick. They are prescribed by my gp, not sure if you can just buy them. Worth a try.
I’ve read on other forums that the other two aromatase inhibitors (anastrozole and exemestane) will cause similar side effects so I am staying on letrozole (Accord). Side effects are knee and back pain, worse in the morning, mild headaches now and then and dreams.
wear and tear at 57? I think not. He would say that wouldn’t he? I heard that letrozole was well tolerated. Recent things I have read said it’s fine for 70% of people taking it. I seem to be one of the 30%. I have decided I have had enough. I am now 68 and I feel exhausted due to the pains in my knees ankles and legs which wake me up almost hourly at night. So given the fairly limited benefit of these drugs on top of surgery which I have already had I have decided to give this up saving the NHS a lot of hassle and hopefully meaning I don’t live beyond about 85. Most of my relatives lived beyond this age but all of them got dementia and ended up having to be looked after until they finally died at the seventh age of man as described by Shakespeare. Not a pleasant prospect. If I end up age 86 I hope my relatives will help me on my way…wherever that may take me.
Anastrozole and Exemestane were worse for SEs for me
Amazingly some folk sail through with none!
Just hoping the aches and pains will go soon when I come off it
Apply for Attendance Allowance very quickly, it will pay for a cleaner and /or a handyman gardener. Also to those of you who need a shower bathroom installed instead of a bath you can get it VAT free, we saved a couple of thousand pounds. I am interested to hear what painkillers any of you are on ?? I have been on Napraxen for almost a year now with Pregrabalin as well due to fractures of the pelvis and spine but was prescribed Morphine patches. I had them for two weeks and it took me another two weeks to get rid of the itchy rounds on my arm where they had been - not for me. Letrozole …well I think that I should have been prescribed the Vitamin D and calcium at the start two years ago . Now I have to have injection every four weeks instead of the infusion I was booked in for. Thank goodness the local cottage hospital will do it apparently and I won’t have to go up to the Cancer centre.
I still think I have the prize for the oldest of you at 77 so wish you all well and keep on keeping on.
Joyce
Dear Joyce, I call myself Seagulls but I am in fact Joyce too (2?)
Thank you forthe advice. What’s the injection every four weeks? Is it to harden your bones? I have zometa aka zoledronic acid but every six months for three years. Everyone’s regimes are different. I also take letrazole which I hate. Never mind. I do my best to conform.
Hi I’ll guess your age by your name, its not come back into fashion yet has it although my daughter told me she had a Ruby-Joyce in her class of seven year olds!!
I had call from the nurse practitioner (never seen my consultant in two and half years) who told me from CT scan = mets in pelvis. She would ring in fortnight to arrange the injections of Denosumab every four weeks to help the bones. I got letter after fortnight confirming this and decided to send copies to our three children that day. Next day she rang and said another radiologist had a look and said NO mets so I had to ring the children and say Good News.
Had first injection into stomach and ok so far.
Problem is I’ve had ulcer for four months on my leg and see district nurse twice a week who has just put me on FIFTH lot of antibiotics which I am reluctantly taking. A perfect storm with the palbociclib and letrozole treatment due to restart this weekend. Think I’ll rattle soon.
Can’t remember which oral Chemo you are on but I must admit that the Letrozole seems to cause most trouble with joints etc from this website.
I wish you well and keep smiling.
JoyceM xxxx
I’ve found that having a small bowl of kefir every evening with honey, blueberries and granola on top makes my gut health very good indeed. Never constipated these days.