Hi all I’ve been on Letrozole for nearly 4 months now and yes the side effects are horrendous. Hit flushes, hair thinning but mainly the joint pain in the lower back, hips and legs mainly . I walk miles daily but couldn’t sleep for it. I have now started doing some stretching exercises for the sciatic nerve before bed and also some butt exercises stretching the legs out by kicking backwards. I also put a cushion in the bed to raise my legs and can honestly say I’m sleeping like a baby without pain…still stiff during the day though, oh and very depressed but we are still here ladies. Give the exercises a try on you tube.
Cheers Angel 62 x
Hi Nannyannie i know exactky what you mean I’m so depressed and feel like Ive aged 20 years. My hair is thinning but the depression is horrendous. I am trying to put a brave face on but I’m really struggling and don’t want to worry my family. I’ve been to the metro centre today and used to love a shopping trip but I could have quite easily cine straight back home as the pain in my lower back was unbearable. I also have lost my appetite which isn’t good. I’m still pushing to walk each day and do stretching exercises but I kerp thinking I’ve had enough. I see the oncologist again on 23rd and making a list of questions. Hipe the be a drug works for you…fingers crossed.
Angel62 x
I have been taking Letrozole for 4 years, it was only after listening to a radio program this morning that I realised that the severe pain I’ve been having in my bones and the tiredness I have could be side effects of the drug. I’m already on opiate based pain killers for slipped disc pain, the pain in my shoulders is unbearable, is there anything that can be done?
Hello all. I don’t usually do blogs, but this s a very important topic for me in my lfe right now. I started Letrozole in April, extremely reluctantly because of the potential side effects, however, I promised my oncologist I would give it a shot. I did not start taking it until a year after my cancer, for various reasons. The first four months on the letrozole were a breeze, except for the hot flashes, which I felt were bearable. Around the 5th month, the muscle aches began, and then the joint pain. I already had pain issues mostly in my low back and hips, which began to worsen. I then developed hand, elbow and knee pain, all new for me. At 7 months in, I asked my oncologist to go off of it until my next appt with him, and he said that would be fine. I needed to know if the new pain in my body was the drug, or something else that might need attention. It has been 3 weeks since I stopped, and while the hot flashes lessened and the muscle aches improved, the joint pain is still quite bad. My question is, has anyone stopped taking Letrozole because of the side effects, and if so, did the pain take a while to go away? I am seeing my oncologist next week, and honestly, if this is how Letrozole is going to make me feel, I just don’t know if I wish to continue. I have read of so many of you doing the full 5 years, but if this is how it is going to make me feel, I just don’t know if I can do it. I welcome insight and thoughts. Thank you!
Hello all. I don’t usually do blogs, but this s a very important topic for me in my lfe right now. I started Letrozole in April, extremely reluctantly because of the potential side effects, however, I promised my oncologist I would give it a shot. I did not start taking it until a year after my cancer, for various reasons. The first four months on the letrozole were a breeze, except for the hot flashes, which I felt were bearable. Around the 5th month, the muscle aches began, and then the joint pain. I already had pain issues mostly in my low back and hips, which began to worsen. I then developed hand, elbow and knee pain, all new for me. At 7 months in, I asked my oncologist to go off of it until my next appt with him, and he said that would be fine. I needed to know if the new pain in my body was the drug, or something else that might need attention. It has been 3 weeks since I stopped, and while the hot flashes lessened and the muscle aches improved, the joint pain is still quite bad. My question is, has anyone stopped taking Letrozole because of the side effects, and if so, did the pain take a while to go away? I am seeing my oncologist next week, and honestly, if this is how Letrozole is going to make me feel, I just don’t know if I wish to continue. I have read of so many of you doing the full 5 years, but if this is how it is going to make me feel, I just don’t know if I can do it. I do take supplements to aid in joint pain. I welcome insight and thoughts. Thank you!
Janie1 which brand are you taking as I was like this with Cipla and since changing to accord I have been a different woman. Cipla brand was hirrendius and lower back pain, hip pain and joints were excrutiating. X
Hi - I’m new here and have been enjoying the conversation. I am 68 years old, and I was diagnosed with Invasive Ductal Carcinoma of my right breast in 1995. I had a radical mastectomy and chemo. I was on tamoxifen for 5 years, and have been on Femara since then. From the beginning, my oncologist told me that my type of cancer won’t be cured, but can be kept in remission for quite a while. I guess my experience with the Femara hasn’t been too bad. I have the muscle and bone aches, sometimes pretty bad, but I also have Lupus, Fibromyalgia, Rheumatoid and Osteoarthritis, so I never know what is causing the pain at any particular time. I am on strong pain meds for those other conditions, and I’m guessing that it helps the pain from the Femara.
I guess my main problem is the hot flashes. I’ve had them since I started with the Tamoxifen, then the Femara, so that’s like 20+ years. My oncologist put me on Effexor back then, and I still take it. It helps lessen the hot flashes a bit. He told me that as long as I’m on the Femara I will still have the flashes. Sometimes I feel like I’m a snowman, and I’m going to melt away (would be nice and cool if I was a snowman!). But he also said that as long as I am having the hot flashes, that means the medicine is working. So when I’m dripping in sweat, or am extra sore, I look at it as my body is keeping the cancer from developing. So I hope that I have the side effects for a long time (but hope they will be tolerable!)
I wish for all of you to heal quickly and be free from this horrible disease.
Hi Everone xxx
This morning Ive not taken my Letrozole as the pain & swelling in my hands is just awful, I suddenly developed trigger finger in my thumb two weeks ago and can feel it coming in my index finger to now!
I ve been taking them since July after lumpectomy & 15 rads.
I use my hands everyday at work (beautician) so its been really hard work & I love my job!
Ive started to take Tumeric with Bioperine a few months ago this week ive started to take two per day has anyone tried this for pain?
I go for my 3 month review this coming Tuesday so i am going to chat to them about it, but the pain everywhere is just to much
I welcome your replies and experiences so good to read this thread ! Xx
Hello Judeworth
Sorry u are having trouble with Femera. …I take a cod liver oil tablet daily to help the joints but many ladies do get trigger finger and it might be that oncologist may switch you to another hormone …there is a an anastroze , exemestance which work much the same as an option .
As it’s a long haul …you need to have some quality of life too xxx
Hello all! Oh how I can relate to all of this! As I explained in my first post, I was on Letrozole for 4-5 months before feeling any of the joint and muscle pain. At 7 months, I got permission from my oncologist to go off of it for a while, to see if the symptoms would go away. I am off for 7 weeks now, and if anything, my pain is much worse! My oncologist does not think the pain would linger after coming off of it. I am at my wits end. I just received my magnesium, Jspindley had good results with that, and I am hoping for some relief. My main question is, did any of you stop the treatment, and have the symptoms persist? I never had knee, elbow and hand pain, until on this drug, so I really do think it is the culprit! I hope all of you on here find relief, at this point, I am not sure I would continue treatment, if this pain I now have is a result of it. It is hindering my life.
Judeworth I asked to change brands and have been tons better…a totally different person. I was on Cipla but changed to accord and sticking with it ?
Oh Cipla brand is disgusting …I got given them twice …felt horrendous on them …I have Accord now and much better. .
Hi Ladies
after my initial mx and chemo, rads etc in 2001. I commenced Femara on the original double blind trial between Tamoxifen…the ‘Gold Standard’ and Letrozole. There were 4 arms to the trial…1- Tamoxifen only 2/ letrozole only. 3/two years of Tamoxifen followed by two of Letrozole, 4/two years of letrozole followed by Tamoxifen…during the trial the results of the maintained recovery on Letrozole were to fantastic that the trial was stopped and all were put on Letrozole_ the trial was funded by Novartis, who manufactured Femara
which is now the most expensive brand of Letrozole…at around £90 pm. I had very few side effects, other than wrist pain,( which I still have many years after stopping and doubt if it was the drug.)
After the trial stopped I was on Letrozole for approx seven years…but then told I could stop…as at that time they hadn’t any idea of future long term, side effects, after 5 years off the drug…my bc came back and I have mets to bones and liver. As you know - once bc comes back it is usually incurable. I will always regret coming off the Letrozole as it was a simple. Self administered drug, without hospital intervention to any extent.
what I’m trying to say, is, if the drug works for you, you might wish to give it a bit of time before thinking of stopping it. When the bc came back…Letrozole wouldn’t work for me anymore and I’ve so far had to try 3 chemotherapies…latterly by a drip, which really impeded my independence…tablets are so easy xx
the thing about Letrozole is that the pharmacies check out the cheapest version each month and fill any prescriptions with that version. Some of them cost £2 pm whereas femara costs about £90.pm
please experiment with different versions before stopping…it is a really effective drug and compared to chemo …a bit of a dream…I’d swap with you any day-there are thousands of us with mets and we each work through one drug after another until the cancer changes its DNA. And we have to switch. Though there are more drugs nowadays, some of us run out of options eventually. It really is heartbreaking.
I wish someone had told me before, I would never had stopped.
love and hugs, Moijan???
Judeworth no problem. I can’t honestly put into words how bad i was on Cipla. Pain absolutely horrendous and low mood was frightening…but 3 months later on accord I feel totally different and just getting on with life again. I just asked the doc to state on my prescription accord brand only…so please try x
I just realized this thread is in the UK. I’m wondering if you have different manufacturers of Letrozole, I am seeing my oncologist tomorrow to ask about Accord and Cipla. My bottle says Teva, but I’m not sure what that means! I have stopped treatment for almost 8 weeks now, and do have to start something again soon. I wish all of you lots of love and strength, as we all go through this!
Thanks for everyone’s advice on here good to know we are not alone, my hands are awful today thats with 4 days not taking Letrozle so tomorrow morning I have plenty of options to ask the breast care team about!
This forum is just brilliant ! I do know i need to take it but its ruining my life right now and have the knowledge to help me speak to them ! Xxxx
Judeworth, I have been off the Letrozole for almost 8 weeks now! The reason I wanted to go off was to see if the joint pain went away (which it has not) in case it was something else that needed to be addressed (I have had Lyme disease in the past)
Hi ladies,
''just a few words of encouragement here…whichever drug you are on now…you are doing your very best to fight this scourge and I want to express my admiration.
I was was told I could stop my letro and I did, and the bc came back…if I could have that time again…my choice would have been to stay on it…
''you are all…whichever drug you happen to be on…following advice and that gives you an improved chance…because you know you are doing the best you can.- what more can you do?
try to avoid too much stress, too much sugar and too much alcohol…and…after Xmas. Get back on track with the healthy options you want to be on.
love and hugs
Moijanxx???
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??
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