I have been taking Letrozole for 6 months due to having a pulmonary embolism and no longer able to take Tamoxifen. The joint and muscle aches are so bad that I am limited as to what I can do ( can’t get in and out of bath or chairs ). I don’t want to stop treatment because of the long term benefits, does anyone have any suggestions pleaase?
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Hi Janro sorry to hear of your joint pain. I find that things are improving for me, been taking it for a couple of months now and the pains are not as frequent (usually early hours) or as bad. Hot flushes too, unless I am getting used to them. Worse thing for me is my hair is shedding, a lot! Amyone know of any supplements that may help?
I used aloe Vera in the past for a bladder problem and it was very good. Thanks for reminding me about it I think that I will try it again…
I have been taking Letrozole for about 7 months. I was diagnosed last November with IDC, had lumpectomy and results were grade 2, no nodes or vascular invasion and clear margins. I started aching in the third week of radiotherapy and haven’t stopped aching since. I get general aches but the main ones are in the outside top of my arm and shoulder which has got worse. I get a shooting pain in the top of my arm and shoulder if I lift my arm too high or if I reach for something behind me. I get a bit confused and wonder if it’s letrozole, rads or nerve damage or a combination of them all ? You can’t help thinking about more sinister reasons but as I was caught nice and early I’m hoping it’s something that will go away. I have my first year check up in November so will ask about it then. Anyone share my symptoms ? Xx
Hi tili
I also find the "accord " brand better than cipra which I had for five months. I’m told by the chemist …the doctor has to authorise a particular brand so i think I will ask doc for that.
The hair loss is better to.
hi I am on my third lot of letrozole and seem to have all side effects going, painful joints, itchy, back pains you name it I’ve got it, never suffered indigestion before but now it’s horrible so painful. I am most concerned about my legs and ankles have started to swell and are painful to touch, has anyone suffered from this and is it all part and parcel of taking letrozole and something that has to be endured for next 5 years? If these side effects continue I’m not sure if I can persevere. I feel like an old person.
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Beetle
It’s just not funny how such a small little pill can cause so much problems …it might settle down as its early days still …I have been on it 20 months …taking painkillers on a long term basis is not good either . If I have the aches I use a hot water bottle or a rub in cream like deep heat .
If it gets too much than maybe you could swap to another hormone pill …there are a few options . After the whole bc thing …you do want some quality of life now …as leyrozole can be 5/10 years …
Hugs xxx
Beetle I really sympathise.I am on anastroxole and my side effects sound the same as yours…can’t stand in the morning, can’t get out of a chair without pain.Seize up after no movement but hurt after too much.Am trying to work 20 hours a week where I’m on my feet all the time and grab 5 minutes here and there and the pain gets me down.Am having a dexa scan next, I suggest you ask for one.
Ferns I’m on anastroxole for 6 months and this last month along with my other pains I’ve got shooting burning pain around and under my shoulder blade and around rib under my breast.Haven’t heard of anyone else who’s had this.
It’s an awful drug. It truly ruins the quality of life. The pain takes you right up to the edge. I will ask the Doctor for the Accord brand and try that.
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Hi. I was prescribed Letrozole after being on Tamoxifen for 5 years. It was ok at first, but then I would get increasing joint pain, tiredness and flu-like symptoms. I stopped using it and the symptoms went away. Tried the different brands, but most were no better. My oncologist then switched me to Exemestane, which is a sister drug to Letrozole and Anastrozole. I take Aromasin brand and feel so much better. It may be worth seeing if you can try it. Good luck.
I’m brand new here. I am taking Letrozole. I was taking it in the morning. I have unbearable joint pain and stiffness. It was easier for me to work while I was on chemo than now. I’m going to try to take it at night to see if the SE’s are better. At night I must clench my fists but in the morning I have to painfully unpeel my fingers. My shoulders hurt the most and it’s constant. The pain wakes me up if I move.
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Morning I can so empathise with you. When I look back in the date if that initial post I can say that the pain is still the same.
I have recently been to see an Osteporosis specialist ( yes ended up fracturing one rib just by putting something in the back of the car 15 months after I started taking letrozole ).
He did quite a lot of blood tests , bone turn over markers , vitamin D ( low levels can cause joint pain) he also sent a copy letter to my oncologist I have recently seen her , she was kind enough to recognise that nobody was helping me ?, she said that it was the letrozole causing my pain. She has given me a month off and then I will start on tamoxifen. I am worried about the side affects of another drug but at least my bones won’t be affected any more.
I take my meds at 6 pm which was ok for me.
I wish you well and hope that your side affects reduce. Xx
Thank you for the supplement recommendation. I could literally cry with the shoulder pain and how debillitating it is. I cant reach up or sideways and struggle to undo my bra or wrap a towel around myself after a shower. It is getting worse so hoping tje supplement works xx
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Hi everybody. Sorry we’re all having problems with this drug. I’ve been taking Letrozole once a day & Adcal twice a day for about 18 months, & I started getting hand problems last year.
I saw a rheumatologist & had a steroid injection in each hand, & started taking Celecoxib, an anti-inflammatory. That meant I needed Lansoprozole each day as well, to protect my stomach from the Celecoxib.
At first all was well & there was no more pain in my hands. But it’s been coming back. My onc said two experiments were ‘reasonable’, & I’ve tried both of them. 1 = increase the dose of Celecoxib. That helped my hands a little but seemed to be bringing on Crohns symptoms, so I stopped after a week. 2 = stop the Letrozole, to see if that’s what’s causing the hand problems. I’m in the second week of doing that, but with no Celecoxib either, my hands are more stiff & painful.
How long does it take for the hand problems (& any other side effects) to go? The hands are the only problem I’ve found with Letrozole, so I’d be worried about starting another drug. My onc seemed not to think that any one brand is better than another, but I notice how many ladies say Accord is good. My most recent one appears to be TEVA. Any opinions on that one?
Has anyone else done this experiment, and how did it work out?
Hi all
I’ve been on letrozole for about 6 weeks and noticed joint pain after a week or so. I also take carbimazole for thyroid which has same SE. Been in these since Xmas.
I have carpal tunnel so fingers hurt too but I’ve created a little splint from half a nail file under my index finger wrapped in tape. As soon as my finger tightens up I put the splint on…it really works.
I take Naproxen for joint pain that stopped working and was upsetting stomach but doc gave me Omeprazole and now the naproxen works again. It does help a lot as my pain seem all down my right side dominant.
I’m also preparing for my radiotherapy sessions on the 11th Oct so loads of water and moisturiser and daily walks.
My main concern is the hour travelling to and from sessions so about 2 1/2 TO 3 Hours round trip I’m a rubbish traveller.
Hope you all can find solutions that work for you.
Take Care xx
i am on letrozole and have been for a year feb, i broke a couple of bones many years ago, but the pains im getting now are unbearable, i have just got back from the doctors as my ankle and knee are so painful, i was prescribed painkillers, i am so bloody angry painkillers they dont touch the pain, i have osteoarthritis in my other ankle, osteopenia in my spine, and arthritis now in my jaw, tiredness that is so unbearable, my hands are starting to feel very weak i am going to see onc Thursday and am going to ask to come off it my cancer nurse told me in no uncertain terms that the chances of my breast cancer coming back was slim, i am feeling very depressed. they say exercise helps, im on my feet all day at work and by the time i get home i just can’t even think about exercising the pain is unbearable, i said to the doctor what happens if the painkillers don’t work which they don’t, she said well come back,? for what different painkillers.
Hi Ladies, i have been on letrozole for 6 months and have severe shoulder pain and stiffness. My bcn ordered a bone scsn and it jas shown i have arthritis in both shoulders. They will not admit that thos is due to letrozole but i am convinced it is@ they have referred me for physio x
I’m new to this site - after reading all your comments I finally feel vindicated in my belief the Leterozole is the root cause of my shoulder pain and trapped brachial nerve. I expressed this thought at my last clinical checkup and it was dismissed by the registrar. I had an MRI last week and await the results. I’ve been on L for 2 years now and the pain really kicked in after 16 months on L and 14 months after radiotherapy. I feel more confident in discussing my thoughts with my Consultant, now. To what end, I know not
I am in AGONY! I have been on Letrozole for 3 weeks and I can’t walk. The pain in my right foot is unbearable. I start radiotherapy on 27th December so not only will I be unable to walk but they’ll set fire to my breast. I hope during my daughter’s lifetime they will find another way of controlling the spread of breast cancer without subjecting us to utter torture., it’s barbaric! The letrozole continues for 10 years! I’m not surprised women can’t tolerate it. Does anyone have any suggestions of how to ease the pain so I can put one foot in front of another? I’d be so very grateful.
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