I forgot to mention that I take a couple of Osteo Panadol on my bad days. It helps me.
Hi did you change from letrozole to tamoxifen? I’ve stopped letrozole 2 weeks ago as side effects so severe and they want me to try tamoxifen ? Lucy
I have been on letrozole 12 mths and can cope with the hot flushes but the pains in my hands and now feet are becoming intolerable - getting worse, not better. I currently have severe tendinitis in my left ankle and foot and can hardly walk, my hands are almost unusable when I wake up. I identify completely with the feeling that I have suddenly become old, stiff and moany (previously fit active 60 year old). The only thing that works for the pain and stiffness is to keep moving regularly (except the tendinitis which gets worse). I use ibuprfen gel as don’t want to take painkillers/NSAIDs regularly, only when desperate.
Has anyone had any benefit from cod liver oil caps please? Any other magic solutions???!!! I will persist in the hope of keeping the cancer at bay but sometimes I really wonder if it’s worth it. Moan over.
Hi dem. I have been on letrozole ( femera) nearly four months now and seem to have got over most of the side effects that I got to begin with. I do get aching but not sure if its the bone Mets or the letrozole.I find a hot water bottle at night good. I take cod liver oil day as well and a vit c tablet to keep colds and bugs at bay!
BUT… my hair is getting thinner and I have cut it down to washing it once a week and avoid brushing it but scrunch it daily !! Last week my scalp was very itchy and tender…aagh.
Carolyn xxx
Hi, the side effects from femara have definitely got worse for me as time has gone on. I’m been taking letrozole just over a year now and the pains I have are no laughing matter. I have a really sore hip that I’ve plucked up the courage to get checked, but fingers, elbows, feet, knees are all so sore too. I also have thought for the last couple of weeks that my hair was thinning, only for my 10 year old to just tell me there that I’m going bald again!!! I also recently started having hot flashes, something I haven’t had up until a couple of months ago. It’s just never ending xx
Hiya Murphy. The side effects of all the hormone pills are a pain. It’s just finding the best one I took tamoxifen and then switched to arimidex for three years. I tolerated this really easily but now the letrozole is the preferred treatment for me. Although I take mine in the morning …maybe it would help to take it in the evening and then the worse se would hopefully b at night!! Hugs xxx
Hello dear ladies! Well isn’t this fun?! I’ve been popping the Letrazole at a dose of 25mg daily for 3 years. Initially was told would be taking for 5-7years. Already been back to Oncolgy a couple of times but they weren’t keen to changr. Just been told the guidelines have changed and will now be expected to take for a total of 10 years! To which I replied ‘NO’. Waiting now for Oncology appt for resolution. Like many of us I used to be a very active, fit 52 year old. Now 4 years on I’m unable to do any of the activities I used to do and enjoy! Now 56 feeling 96! Work full time but by lunchtime I’m really flagging and struggle to concentrate. This is so difficult, yes we have life (and I’ve lost dear friends through BC) but without the quality leaving a yoyo of emotions. Inside I’m jumping for joy but the Letrazole prevents me from doing the physical jumping! Good luck to all ?
Hi Ladies, I have been on Letrazol for about 9 months now following lumpectomy, sentinal lymph nodes removal & radiotherapy. I get hot flushes and joint pain - my Oncologist suggested Cod Liver Oil for the joint pain and Evening Primrose Oil (high dosage - I take 2 x1300mg daily) for the hot flushes - they both help but are not a cure-all. My biggest problem is lack of sleep. BC Nurse suggested taking the tablets in the evening rather than the morning which I think also helps but I am just soooo tired. I take herbal sleeping tablets which give me about 4-5 hours sleep on a good night but it’s just not enough for me to function well on. I am persevering as I read that Letrazol is about the best for keeping the cancer at bay and I am scared to switch to an altrnative and get it back again. Any suggestions? Keep strong ladies xx
I have been on Letrozol for about 5 months. Initially the joint pain was unbearable. The doc and I figured out that there was a interaction with my cholesterol med. He suggested I get off of the Letrozole and Simvastin for 2 weeks and then introduce the Letrozole back into my body by itself. Initially this helped the joint pain. But as time goes on and the letrozole builds up in my system the joint pain is back. In addition to the joint pain, I am now getting muscle pain in my hands, feet, shoulders and arms. I was an active 62 year old woman before BC. Now I feel like an old lady. I can’t imagine feeling like this for the next 5 years,
I’ve been on Femara for three months and I’ve not had the joint issues but I’m definitely having hot flashes and, most recently, LOTS of crying over every little thing! My oncologist put me on Effexor at the same time as the Femara and I think that’s helped with the hot flashes. Even though I still have the flashes, I think they would be much worse without the Effexor. I also take 1mg of Clonazepam at bedtime with all my other meds. It sounds like a lot of meds but I’m finding my way in this relatively new journey and this seems best for me right now. I’m 48 years old (surgically post-menapausal for about 13 years) and found out June 20th I have invasive ductal carcinoma, grade 2, ER+, PR+, HER2-. It was found early and not in my lymph nodes so I’m Stage 1 and no chemo. I’m two weeks post-rad (33 treatments). I have large breasts so the radiation burned me really bad and I’m still healing and growing new baby-soft replacement skin! Some days I think this new journey as I call it is overwhelming and is probably part of this new crying thing! Other days I think it’s the Femara and I’ll just spend the next 5+ years crying at the drop of a hat! I do have a question…has anyone had nausea with Femara? I do have bouts of occasional nausea that reminds me of morning sickness. I don’t know where this comes from…if it’s the Femara or not.
I have been on Letrozole (Femara) for 10 months now, and the worst side effect is constant nausea, together with a metallic taste in the mouth.
Has any of you suffered the same - and: if yes, will it pass, and when??
Many thanks.
Elke
I have just been looking through all the comments again, and with it, I remember, for example, last night, when I woke up in the early hours (having precious little sleep anyway), absolutely soaked. Had to change my pyjamas 3 times, before my system calmed down. Happens quite often. Afternoons as well. Anybody can advise?
Tried this morning the “pill with breakfast” but no success so far! Same for drinking water, water, water. Damn taste in my mouth. Oncologist said I could take Primparin, which helps; all the others do nothing (Motilium and the like). But GP says no. Took one anyway at 11 am because could not bear it any longer. Sleeplessness is terrible, and tiredness and weakness when doing the most normal chores.
Feel better now that I can let off steam. How I am going to go through the next years, if I live…, I do not know.
Do these side effects subside???
If someone KNOWS, please tell!
Love to you all
Elke, from Southern Spain
I have stopped taking Femera for the past 3 weeks, I just couldn’t take the side effects. I started with Arimidex which had me in a deep depression bedsides the aches and pains. My oncologist put me on Femera and for the first few months I was feeling better emotionally but the bone pain never really went away. She prescribed Tamoxiflin even though it is recommended for premenopausal patients which I am not. I haven’t taken the pill because of the scary side effects I have heard about from other patients. This past week the pain in my legs, especially the right one has me up all night. I feel so defeated at this point as to what to do. Im 71 but as most of you have said, I have always felt younger and in good shape. Now I can’t even get out of a chair without pain. I have decided to take my chances and not take these pills with their awful side effects. My concern today is why has the legs pain gotten worse since I am not taking anything. Is this going to be a long term problem. Oncologist doesn’t give me much information. Has anyone else stopped taking any of these pills, but is still suffering with bone issues?
Diane
I also am taking Femara and Effexor. Began both on Nov 1, 2016. I was real nauseated first few weeks. In reading side effects it was the Effexor causing it. I read nausea would go away or get better after a while and it did for me. I had not had any bone and joint pain until last week. I’m noticing it’s getting worse. ? My worse problem of all though is the hot flashes! Dr took me off my hormone medicine after being on them for 18 years. Plus the Famara causes hot flashes too. The Effexor does help with them some but still pretty rough at times. The night sweats wake me up all through the night. I know it could be worse. I was blessed the cancer had not spread to my lymph nodes even though part of it was aggressive. God is good!
Hi My oncologist has taking me off femara for a month I was getting hot flushes fast heart rate and high blood pressure I worry about everything I have had a ultra sound on my upper abdominal I’m thinking I’ve got carcinoid syndrome with the hot flushes ultra sound was clear.
I was diagnosed in 2011, lumpectomy and nodes out. Chemo and radiation. 5 years of Femara. I am now in my 6th year of Femara. The side effects are mostly VERY sore bones, joints etc. ALL OVER, neck back, elbows …the whole body takes turns being sore. Lately, for me, it’s been my FEET! I am used to the sleepless nights. I also stopped taking Ativan to sleep because I thought it gave me a cloudy head all day the next day.
I am committed to staying on for 10 years (4 more). The side effects certainly beat the alternative! I am thankful for this drug that keeps the HER2 away.
Hej all! I am from Sweden. I have been taking letrozole for one year now. The side effects are muscule ache and gastritis. I walk 1,5 km every day, swim in the lake during the summer and follow “alkaline diet”. All this helps me to sleep 5-7 hours and be in good mood most of the day. I was diagnosed for b.c. aug 2015, chemo, surgery, radiotherapy, capocetabin and letrozole. I am 68. But I must say that muscul ache began just when I entered climacterium, 10 ago. So I don’t know whether it will stopp one day with or without letrozole and I am trying not to pay so much attantion to it. Blessings to all.
Yes I can reassure you that the joint issues are not permanent. I stopped taking femara due to these side effects and.my oncologist suggested it was ok to stay off them for a few weeks observe the difference. Over that time pain lessened and full movement returned. I started again and it has been easier to deal with the.side effects knowing they are temporary and not the sign of degenerating joints or rreparable Damage. Having a experimental mindset helps- trying out different types of exercise to see what makes things better or worse,and noting what foods/drinks etc contribute to hot flashes. I do find some patterns another helps give back a sense of control (well…some) 
While some joints are more prone to stiffness and pain the problem moves around and seems related to certain activities- but overall, exercise does help- and pain is worse after a few days without exercise. Recent research indicates that having theoccasional break from femara may not hurt -and could possibly improve outcomes. Might be worth looking into. Certainly taking a break from the drugs every now and then has helped me enormously in coping, and reduces the distress. But clearly it’s best to remain on the as mochas possible. For sleep problems - a tiny amt of seroquel (a micro-dose - a tiny 1/5 or 1/4 of 25 mg tablet of apo- quetiapine - an anti anxiety medication) works wonders for insomnia and leaves you feeling good the next morning. I find it is worth taking something to help w Sleep… All feels more manageable when you are getting good rest.
I have been on letrozole for 6 weeks now and the side effects are awful, my bones and joints are so painful and sleep is a thing of the past. Before I started on letrozole I looked forward to my gym sessions 4 x weekly but I now feel as though my get up and go has got up and gone. Hopefully I will only be on this for another few weeks prior to my surgery on the 6th June and radiotherapy thereafter. I hope that there is something else I can take after the radiotherapy .
How long were you on it and how long were you off before you started returning to normal? I have taken it for a year. And have gradually gotten to the point I could not stand. I kept complaining but I thought I was the after effects of chemo , radiation and my fibromyalgia. My dr still acts like it might be something else but I have had chronic pain for 40 years without having to resort to pain killers and using alternative methods to control it. This is different and consistent with what others describe. I have been off it for two weeks and it seems like it stopped getting worse and I can lift my arm over my head but not a whole lot more. I am wondering if I need a second dr option. Thanks.