I too have muscle and joint pain. Have you ever suffered from constipation as well? I seem to have upset stomach and some gassiness as well. I started letrozole in April 2020 so haven't been on it long. Hopefully, it improves soon.
Thank you for such an honest and forthright post. I have just started taking Letrozole Cipla brsnd and am dreading the side effects, even considered whether to trust to luck and ditch them but after your post i will try to persevere. However hang in there as they are find more and more mecications that might be just round the corner. I believe they have just brought out a new drug for ovarian cancer, who'd have thought that. My k8ndedt thoughts.
Ive been on lethrzole since June and with me I have achey joints and back varied every day where It is I'm on pain relief it. Has anyone appitite changed mine decreased rapidly since xx
I’ve been and letrozole for about 2 months and was really feeling a bit smug as I has minimal side effects apart from a bit of night flushes which I feIt I could deal with. Then Boom! Woke up with horrible clicky feeling in my hands - nobody mentioned THIS at the clinic but I now realise it’s really common. From then on it’s got worse - sore ankles with swollen Achilles’ tendons, sore hips, shoulders - I feel crap. I had hoped to be back playing squash but right now I just can’t see that anytime soon. So now I’m depressed as well. Can’t decide if I’m being pathetic or not as I look at worse stories. I’m 60 and was pretty active and now just feel I’ve become an old woman overnight. Any suggestions for helping with side effects to welcome. I’ll take any medicine available if I thought it would help.
I wasn’t offered anastrozole so can’t say, the other things I take that I really think help is a vitamin D supliment and Curcumin (Tumeric) and Black Pepper supplements i think this has also helped me.
I feel really well compared to this time last year! Happy I wasn’t happy on the Lerozole it took me to a bad place, I hope you find a medication that suit you xxxx
i had terrible side effects with Letrozole, couldn’t use my hands both thumbs and two fingers got trigger fingers my brain was like a fog! So the said to try Extremestane this made no difference still awful!
so I went back after taking myself off it for two weeks saying I couldn’t tolerate the side effects, they switched me to Tamoxofen this was in January this year and honestly it’s doing the job for me I get a few hot sweats and a bit achey but all do able! My hands are back to normal! So don’t give up on them speak to your breast cancer nurse.
i had stage 2 lumpectomy 15 rads no chemo so feel lucky !
Hope you get sorted xxx
I have been off Leterzole Since Sept. 14th the pain has lessened a lot, but still having trouble walking very far without the pain kicking in. How long did it take you for the bone and joint pain to go completely away? I am hoping this pill has damaged me for life.
My GP has just agreed to prescribe me Femara despite not being convinced it will make a difference. However having spoken to others they have had less side effects on the Femara than the generics.
Wasnt going to take them at all but saw on a hospital letter sent to GP only that I had multiple lesions and not just one like they told me. I will be having words at my next appointment next week. So I am now taking the tablets with this new knowledge
My predict was about that too after 10 years, I carried on for three more weeks but became weirdly suicidal so stopped taking those pills. Feeling more 'normal' now!- no pains, mood swings. I'm waiting to see my Consultant in May after my rads sessions finish to see what he thinks/recommends.
Such a dilemma for us all, horrible fearful situation, but thinking that I may not take any hormones and enjoy the life I have with a good diet and healthy frame of mind rather than feeling appalling every day.
Its a personal decision, I know.
I have also been on Letrozole for five months now. I also suffer from night sweats, hot flushes and joint pains. I also feel nauseous in the night.
These are the things that have helped me a bit:
None of it has gone, but it is more manageable. When I get up in the morning, I walk like a wooden puppet until I get myself moving. My poor husband is so patient as I open the window, then close it, then open it again, because I am going from hot to cold. I am trying to persevere with it.
Do other people get tearful? Not all of the time, but occasionally, I get really tearful for absolutely no reason.
Best wishes to all x
I have now been off the Letrozole since Oct, went off it with my oncoloigst's permission because of side effects. I am seeing him next week, and will resume, but this time with the real deal, the Femara. I believe I saw someone on here say they had better luck with that. I agree, Judeworth, I am afraid to take it, and afraid not to take it. What are we supposed to do, it is a true dilemma.
Hi Dusty I’m 58, suffered Letrozole for 6 months I know what you mean about the sideways walk!
Ive had a lot of joint pains, worst was my hands ive got two trigger thumbs now, they put me on Extremestane to see if that was better...... not made any difference, today I’ve been back to clinic and am off everything for for weeks! Almost did a dance! I will,start on Tamoxofen in after the four weeks, see how I go on!
My predict with hormone therapy was 1.4 over 5 years then 3.8 over 10. I will giving Tamoxofen my best shot out because side effects for me have been awful if this is as bad I think I will take my chances as in ten years I’ll be 68! I don’t want 10 years of pain and being depressed, but as I say will see how it goes! Tc xx
Hi there,I'm in a state about this, took my letrozole for a week only and by day two I couldn't get down my stairs unless I took a step sideways as pain in my left knee and shin was excruciating...took anti inflammatories to help it settle down a tiny bit...my poor dog had to walk so slowly with me as it was almost impossible!...also had terrible moods, sweats, headache, eye drying up, neuralgia pains and decided to stop for a while. I'm due to start my rads in April and the idea of all this pain plus effects of rads is just too much for me to cope with.
I was advised by my Oncologist and looked at the outcomes with him at the 'predict' site which shows the percentages of taking adjuvant therapies over 5 and 10 years and mortality rates.
I'm pondering on whether to not take it. You can put in your diagnosis and age and it works out the % rates, so helps in some ways to make an informed decision.
It's so difficult to know what to do though. I'm 60 years old and fit and fairly active and work full time, I'm not sure I'd have any of that left if I take the Femara Letrozole..it's s hard t now what to do
love to you all xx
Hi Stephanie, I’m in exactly the same place as you, Ive stopped taking Exemestane for about 5 days as ive just had enough, seeing the next ten year in this pain is so depressing I’ll; be 68 by then best of my last years gone!
but its such a dilemma i dont want cancer coming back but what do you do! I am at BC clinic next week god knows if i will be any the wiser ! Please stay in touch xxxx
Morning Corrina, I’m due back at breast clinic in 2 weeks so I think they are going to try me with Tamoxofen then but not sure if its right for me I’m 59 this summer 10 years on this what is this going to do to my quiality of life during that time..... At min got new pain in my shoulder its bloody awful wears you out as I’m not sleeping well at all, luckily I work part time!
I keep having a couple of days off at the weekend (taking the tablets) and on second day I can feel a difference, wish they would give us an alternative!
On the whole I’m happy love life just sick of pains in joints! Feel I’m between devil & deep blue sea no idea what to think about taking these for years and years as i want to be around for years and years to!
hope you are doing better on the tamoxifen if you are then might be way forward for me! Take Care Judith xx
Hi, I’ve been on Letrozole now for two and a half years, apart from a few side effects when I was given a different brand, everything was going well but over the past month or so I noticed I was getting more aches, they do improve but then come back. I was already taking several supplements and adding turmeric, fresh root and powder form, to my cooking etc. I’d heard about Golden (turmeric) Paste but as I was already using a fair amount of turmeric hadn’t tried it so thought I’d give it a go and I do think it has helped me. It’s easy to make and you build up the amount you take according to how it affects you. I imagine you ladies have already tried different brands of Letrozole to see if that helps? Also, I was told by a pharmacist it is important to stay on the same brand as much as possible rather than having a different one every month or so, once you’ve found the brand that suits you best. Hope everyone is keeping warm and the weather improves soon as I’m sure it’s not helping us! Kxx
Hi Julie, I just found this site, as I was googling, joint pains w/letrozole. I have been on ibrance + letrozole slightly over 2 years, about 2 months ago, I woke up one day with severe pain in both hips, but definitely worst in the left hip, sleeping on that side was impossible for months. I am afraid to go off the meds because my body is responding so well to them, but at the same time the pain and stiffness in my walk and movement is just unbearable. I used to excercise a lot and teach yoga too, and here I feel I have aged 20 years in 2 months, the imaging scans showed pretty badly inflamed hips, all other tests came negative to identify the cause, so it must be the medication. I did a couple of acupuncture session, added SAMe 400 and cat's claw, and turmeric and liprynol, got slightly better, but some days, not exactly sure what triggers it, it fluctuates and that drives me insane...not sure what to expect on this journey, a bit scary really, but I pray and try to stay calm but insanely exhausting, hope it all goes away!!
Hi Judeworth sorry havnt answered before now but just seen your post today.I had to stop taking Extemestane as it had a really bad effect on my bowels which lead to me having the runs so bad I was worried about leaving the house, I have now been put onTomoxifen just over a week ago. I got a really bad stomach straight away which gave me the runs and was really upset by that however that seems to have settled down now for the time being anyway but now my shoulder elbow and wrist on the side where I had my lymph nodes taken out are really sore, .Im still struggling at work ,put in for voluntary redundancy and am hoping they give me it . then maybe I can find a part time job Im worn out with it all. Im also frightened to give up the hormone therapy as it would be my worstnightmare getting the cancer back but saying that I stand more chance of getting womb cancer or having a DVT orhaving a stroke now Im on Tomoxifen. Really dont know wht to do for the best. I too take Tumeric but I make a bit of a concoction, tumeric,ginger,cinnimon honey black pepper, olive oil boiling waterand a little bit Ko Ko milk,, Im just carrying on with the Tomoxifen for now in the hope it does its job, but if things got too bad I would have to assess the situation again then look at alternatives .Ive never heard of bioPerine?.. Think if I wasnt having to go to work I would manage the side effects a bit better..Pease let me know how your getting on if you see this post that is..xxx
Hi , diagnosed with BC in 2014 - stage 2 - lumpectomy + setinal lymphnode and 5 others removed at age 51yrs. Started taking Tamoxifen following surgery - opted for radiotherapy but not chemo. 2yrs on Tamoxifen - started having abnormal bleeds which hospitalised me eventually - they basically couldnt stop the bleeding, so referred to gynae oncologist , changed from tamoxifen to letrozole and started a series of regular womb biopsy checkups - always came back clear , but the bleeds were so heavy and such a nusiance and so irregular that I struggled to plan holidays etc so i requested a hysterectomy - my gynae onc was pleased when I suggested this as he was concerned that my symptoms were worsening. I had the full works - hysterctomy, cervix and ovaries removed. Outcome of the op was all good but the consultant did believe that all the issues I had were caused by the tamoxifen. So 18 months later I'm now living with letrozole side effects. Cant complain - I'm still here but I am constantly in pain now . My hips and legs are stiff to the point that I sometimes struggle to walk properly - I exercise , work full time and I'm not overweight, but nothing helps except painkillers , which like everyone else I dont like taking because they carry their own health issues..... I'm starting to realise that cancer changes you for life but I still know I'm one of the lucky ones because I'm still here to share precious moments with those I love.... I dont want to spend the rest of my life traipsing back and forwards to the doctors looking for solutions , I just want to know that the pain I feel is nothing more than the aftermath of the disease and not something new to worry about .... then I can just get on with living 🙂 All we can do is keep telling each other that we are not the only ones and keep sharing our stories - it does get you down , but you are strong and you can keep going , I wont let this beat me and I bet you feel that way too !
I haven't been here in a while, and just read over everyone's status. I started Letrozole last Easter, and was on it for 7 months. At about 5 months is when I started to develop the muscle and joint pain. I asked my oncologist permission to go off of it (at 7 months in) to see if the joint and muscle pain was caused by the Letrozole, or if there was something else that needed addressing (I had been treated for Lyme disease in the past and wanted to make sure that was not recurring) After I came off of it, my joint pain got worse intstead of better, mostly in my knees and elbows, which I had never had before. My oncologist said my symptoms should have disappeared rather quickly, so now I am going to see a rheumatologist for my joint pain. I have been off the letrozole since October. I just can't help but think that this drug is responsible for my pretty bad elbow and knee pain, it just seems too coincidental. My next step is, to see the rheumatologist, and restart AI treatment. but with the real deal. Femara instead of Letrozole. I remember someone on here saying that she had much better results with the actual Femara, instead of the Letrozole, which is generic.
I truly hope all of us find our comfort zone. Has anyone gone from Letrozole to Femara, with different results?
I've been prescribed Letrozole as I'm about to start rads in a months time after two lumpectomies and I'm so worried that I'm going to get horrendous se??
TBH before I was diagnosed (nov 2017) with BC- stage grade 3 DCIS I'd suffered from undiagnosed terrible pains and burning pain in my feet and legs which worsened after three yrs and I was eventually diagnosed by a new enlightened GP with severe vit d deficiency in 2015, which improved after loading doses and continuing regular supplemts. The bone pain -osteomalacia was awful, in my ribs, sternum and leg bones and I was unable to walk or stand for more than 15 mins at a time. Also got poor sleep and brain fog- horrendous. I just about mananged to do my job, but had to work part time.
I gradually recovered over a year and lost weight only to find a small lump!
I wonder if some of the leg pains described MAY be a vit d deficiency on top of awful SE??
As i say, i'm not looking forward to having pains again as the SE sound so similar to low vit d levels, and I was told that i would need a bone density scan to make sure my bones/calcium levels are good. I'm now wondering whether I want to take hormone therapy?
So glad I found this website. Just needed to whine a little. Starting my third year of Femara. I went through three different AI’s each one worse than the one before. Pain in my thumbs got so bad that I couldn’t open a zip lock bag. I went back on the Femara because the last drug I tried was costing me way too much money. I figured if they were all going to cause pain I might as well take the cheapest one. Anyway, I had to lose weight before my plastic surgeon would do my reconstruction surgery. After being on the “keto” diet for several months, losing some weight and exercising more, I was feeling great! Joint pain much less, brain fog gone and I could play my cello again because my thumbs, wrists and arms were not bothering me. Here I am about a year and a half later. Gained back a little of the weight, still trying to exercise but pain in my knee and hips is really getting me down. Ibuprofen helps but doesn’t take it away completely and now they say it is hard on your heart. My onco wants me to be on this stuff for 10 years! I just don’t know how I am going to make it. I take glucosamine and tumeric. Wish I could go off of it for a few months for some relief. Arrrrggghhh.
I went to my GP today due to very bad pain in my outer thighs from my hips to my knees. I have the usual joint pain caused by Letrazole but this has just appeared the last 3 months. (I have been on letrazole 19 months) I cant sleep as when i lie on my side it burns like hell, it hurts when i walk upstairs and is very painful to touch. The GP took bloods and said she would get them tested straight away. They all came back normal. The GP advised taking pain killers but i said that i do not agree with taking pain medication on a regular basis as this could also lead to health problems and as it is i have enough. I am so fed up with pain every day and every night. It is making me depressed and i can not afford to stay off work. I really feel like stopping taking the Letrazole. Is anyone else feeling like this 😞 x
I am positive that all the aches and pains we feel are due to lack of oestrogen.....to me it means that wee tablet we are having to take is working. Some makes of letrozole are better than others....I am finding the sandoz make ( made by the company that makes Femara) is best for me. My hands, feet, hips and sometimes other joints hurt when I get up each morning and I sort of seize up after sitting for a while but after a shower I fel better. I’m taking turmeric capsules....don’t know if they help or not but they aren’t doing any harm!
I too have been on Femara for 1 1/2 years. I have pain in both knees, my right shin, both hand, lower back, yuck. I can’t believe this little pill causes all this pan. I had a total body scan one year ago and everything was clear. I’m always worried about cancer spreading. I had Stage 2 Breast cancer and had 6 rounds of chemo and 25 radiation treatments.
I too have been on Femara for 1 1/2 years. I have pain in both knees, my right shin, both hands, yuck. I can’t believe this little pill causes all this pan. I had a total body scan one year ago and everything was clear. I’m always worried about cancer spreading. I had Stage 2 cancer and had 6 rounds of chemo and 25 radiation treatments.
I am wondering how you are? The Extremestane is not helping me at all, I’m going to see GP tomorrow ive ha a blood test to check inflammation markers to be sure there is not an under lying cause but I doubt there is!
I have spoke to Breast Cancer nurse they have suggested Tamoxifen next!
But I really dont know what to think, fed up doesn’t even cover it for me with horrid side effects! But am scared to give up on the hormone therapy to!
Ive read up loads on Tumeric with BioPerine, I’m going to ask for a month off everything and double up on this instead.
I have been thinking about you as I’m in same position with work its getting really difficult xxx
Hi Nannieannie so sorry to hear you have been so unwell. Hope your feeling ok now?.
As you may have seen from my other posts I have had to come off the Exemestane as it was having a really bad effect on my bowels. I am having a break until I see the surgeon at the beginning of Feb . Going back to Letrazole isnta option for me as it effected my memory and caused so much confusion and fatigue I was no longer able to do my job properly. I think they will probably suggest I go on Tomoxifen even though they dont always give this to Post menopausal women . It is slightly less effective for post menopausal woman than the exemestane and the Letrazole but only slightly according to my oncologist but I wo .rry about taking that one as well as it can make youmore likely to cancer of the womb but think this is the only other one they can offer me.Feel like Ive been ill since my surgery last year due to all the side effects of these meds which makes it hard to manage working and having nough energy to have some fun but good news is I had my first mammogram since my surgery and it didnt show any reacurrance. Please let me know how your doing .Take care xx
Hi Judesworth not good news for me either . Had to stop taking Exemestane as it upset my bowels and was unable to go out of the house for fear of having an accident . Luckily this has started to right itself now Ive been off the tablets for a few wks, I suffer from painful joints but that didnt get worse but I do take tumeric tea. Its a recipe off the internetI its a mixture of tumeric, cinimim ,ginger ,black pepper, olive oil and manuka honey and hot water and milk .Not very nice but I take it like medicine. supposed to take down any inflamation in your body. Good to hear your going dairy free .I dont buy in any dairy products to use at home now but do have them when Im eating out sometimes but probably better not to.. Let me know how your getting onyour getting on take care xx
hi Judesworth I do have some dairy when Im out and about but at home I now have milk made from coconut and have dairy free margarine and no longer have cheese.
Hi Moijon So sorry to hear your cancer came back and thanx for your encouragement. I guess your right we should keep taking the tablets to give ourselves the best chance but we also know that cancer can come back even if your taking the tablets although its less likely. Ive had to stop tablets at the moment as really couldnt work if I kept taking them due the side effect. Im hoping you are ok and whatever treatment you are having now is helping slow down your cancer and hopfully you will have it succesful ttreatment . Take care
ive developed bad hand pain over the last 4 weeks - have been on letrozole for 6 months. Symptoms are very achy hands (mostly fingers) when I wake up, and real pain bending or unbending my fingers. It eases a bit during the day, but gets a bit worse within an hour of me taking my daily Letrozole (I do it at dinner time) and then gets worse again overnight. I’ve also been getting pins and needles in my fingers, and feeling at times like my hands are very cold.
Apparently this is a known side effect of Letrozole, unfortunately. It’s something about the tendon sheaths (google ‘trigger finger’). I’m finding it really painful, and it’s affecting my ability to function (I’m 46 and work full time).
Things im trying which seem to help a bit are wearing arthritis compression gloves at night, ibroprufen when it’s really bad, and glucosamine joint cream to massage into my fingers (painful but seems to work).
Hope this helps.
Hi ladies, I took Tamoxifen for 5 yrs and my oncologist recommended I go on anastrozole for 5 yrs because I am HER2+ with 1 positive lymph node. I’m 51 yrs old and had a hysterectomy 3 yrs ago. I experienced awful hair thinning/loss with the Tamoxifen and couldn’t wait to for the 5 yrs to pass. I was reticent about continuing on another 5 yrs starting on anastrozole, however we breast cancer survivors are warriors and have to find ways to cope with the side effects! I was still experiencing the bad hair side effects and was having awful stiff hands with the anastrozole. After 3 months, I saw my onco. and he switched me to the Letrozole which after 2 mos. the hair seems to slightly be recovering, but had terrible bone/joint pain in back, legs and some in hands. I since learned to take omega-3 1 a day with onco permission and has taken the dreadful aches and pains away🙏🏻
As said in my previous posts regarding letrozole I had dreadful side effects like lots of you. To cut long saga, I had 6months of the real McCoy Femara and paid 125 pounds monthly for the private script. Side effects lessened a lot. I did lots of research and discovered the same company who make Femara also make another letrozole called sandoz. It has exactly the same ingredients as Femara and not the coating, which I think causes the problems, as other brands of letrozole. I’ve been on sandoz letrozole for 2 months and feel wonderful. I’m sleeping, have energy etc.....I still get stiff hands and feet but it goes til I sit about and I do think some side effects are due to lack of oestrogen. It’s worth a try ladies. Boots charged me a “ handling fee of £24 for the first 2 months but yesterday they waived the charge! Better than £125 for Femara!
news not good, was OK for the first six weeks on Exemestane, felt good. Got taken into hospital with an bacterial infection in my arm where the nodes had been removed for three days of intravenous antibiotics then sent home with oral antibiotics. Started to feel anxious and depressed again like when I was on letrozole. Took me off Exemestane for an over Christmas break which was good but have now been told I must go back on one or the other. I am back trying letrozole again, only had three so far. If side effects too bad shall change back to Exemestane to try again. Am taking the letrozole at night now to see if that helps . Will keep you informed. Very Best Wishes, hope you’re doing better on Exemestane.
Hi Corrina, I’ve been taking Exemestane for 7 days, half of me knows I need to take it to help prevent re accurance. But side effects so far for me have been to much! Arthritis is bloody awful mine been terrrible started to worsen in November that would be 5 months after starting Letrozole. My hands are the worst really swollen and painful.....
I am going to give Extermestane a chance but Ive been looking at alternatives natural ones, I take Tuemeric with the black pepper in read lots fo good stuff about it and it cant do any harm!
Also read there is probably a link with breast cancer and dairy so looking to change my diet a bit to!
TBH I don’t know wheat the answer is, I’m self employed using my hands all day as a beautician !
Hi Judeswrth I had to me off Letrozole because of side effects and have just started taking Exemestane about 3 week ago. Hoping this has less side effects . would love to hear from you as would be good to know how you are getting on with the Exemestane having started them about the same time as myself.. at the moment Im feeling really tired and Im sure my athritis seems worse. My arm where I had the lymph nodes removed is also stiffer than normal and uncomfortable . really hard going to work when your really tired stiff and achey! hope yu are ok? Corrina xx
Janie, one never knows exactly where one is...but am now on my fifth drug in four years, since it came back....as I mentioned to someone before....each drug works for a while,(hopefully) and then stops.....and you need another one...../
i am glad you are thinking of getting and taking advice about a preventative drug.....much more sensible to prevent it coming back than .......needing more intrusive intervention.
also, I felt safer whilst taking letrozole...felt I was doing something.....
best wishes and hugs
I will stay away from that then! Will keep looking for alternatives there’s a lot out there these days.
bought myself a fancy blender to, on a mission in the new year ! thanks
Thank you Judeworth! I'm glad you just posted that, because I believe soy is something we need to stay away from, as it mimmicks estrogen. I use almond or coconut milk, but I was never a milk drinker to begin with.
Your quite right Janie! I’ve listened to what you’ve posted on here you speak a lot of sense & you’ve been down the same road as we have Moijan.....xxxxx
Collected my new prescription for Exemestane, i stopped Letrozole because my hand where really suffering, almost two weeks off them and just starting to feel a difference. So going to get back on the hormones after Christmas.
Ive been reading a book about the link to breast cancer with dairy products so in the new year I’m going to go dairy free, choose soya alternatives. Has anyone tried it?
wishing you all a brilliant Christmas xx
Moijan, I love your philosophy! I am going to be going back on something, just don't know what yet. I am sorry to hear that your breast cancer returned, and you give good advice. I hope this is not too forward, but where are you now in your journey?
Love and hugs to everyone, Merry Christmas or whatever you celebrate, and let's all have a spectacular 2018!!