HI, I think I must be one of the lucky ones, I have been on Letrozole for three and half years now, and hardly any s e, slight thinning of my hair, no joint pains, I am having hip replacement in Aug but this due to arthritis.
Having gone through various brands of Letrozole and suffering from various S Es on all of them I asked my GP to prescribe Femara, which he has, started taking them on Saturday - so hopefully in a while I will feel an improvement. Not expecting the hot flushes to go away but hopefully the joint soreness will. Lucky in that I have not had any big weight gain problems although I did start to gain some pounds on one of the generics. On the last brand, TEVA, I started feeling as if I had been drugged at times, so tired and really “spacey”, also signs of not being quite right were showing in my nails (and hair - loss of shine) - have strong nails normally and that certainly isn’t the case at the moment. Love having nails manicured with O.P.I. gel varnish but the last lot peeled off by itself, normally lasts a good 3 or 4 weeks, this peeled off after two weeks. Had nails done on Saturday and one has already come off, so taking it all of on Thursday and leaving to let nails, hopefully, recover. Can only put this down to the Letrozole.
On a positive note - I had my first check up and mammogramme at the beginning of June and no sign of cancer. 
Ive been on letrozole…various brands and this one…Accord is making me tired, stiff and achy. I spoke to my breast care nurse who said I really shouldbe prescribed femara by gp. Anyway I pick it up tomorrow and I am hoping the side effects subside soon.
Hi everyone
I started on Letrozole last May (2012). My bone density scan was brill- above normal for my age but my onc said maybe try calcium. I bought some at H&Barrett but capsules gave me reflux so went on to huge ‘horse-size’ calcium tablets from H&B. I never have bother taking tablets but oh boy- I did with these! Gave them up and eventually nurse practitioner at 1yr check after mastectomy (mast done on Oct 2011) said get calcichew on precription- why didn’t some one tell me before? I am a nit! However I found I had aching joints on Calcichew- my hips & in partic my hands were clawlike at times. Since I decided my bone density had been ok & it was just a precaution- I came off the calcichew- and everything went back to fine.
However once the pharmacist gave me a different Letrozole make from my usual(Teva) and I did find they gave me reflux (never had indigestion etc before till these times- could it have been effected by my chemo?). The pharmacist now ensures I get Teva everytime. I did find some relief swopping round the time I took my Letrozole when I was having the bother- now I take them before getting into bed- that seems to reduce any side effects- though Ido itch in bed!
Hi Buffy, hope like me you notice fast improvemnet with Femara. I clkeaned the kitchen from top to bottom today - even cleaned the main oven!!!
Hi I have only been on Letrozole for 3 months.
When I started I got severe joint pain in my knees and hips and could barely move if i sat in a chair for any time. I made an effort to exercise- Long walks and a conditioning programme in the gym and im also taking joint supplements and oil- though im not sure how helpful they are? What has happened is that all the pain has gone from my knees and hips but I now have signifacant pain in my shoulders and through my shoulder blades to my neck.
One thing worth trying is changing the time of day you take the pill. I find taking it in the evening better than in the morning- it seems to have lessened the stiffness hip pain etc during the day
Im really hoping the pain in my shoulders might go as well -but it seems to be staying. Certain movements are so painfull they make me cry with pain. Anti inflamitories help but I dont like to take these all the time. The pain keeps me awake at night. Other than the joint pain I find the hot flashes are not too bad and so far i havnt had weight gain issues.
Trying to work when in constant pain and lacking sleep is a real problem for me at the moment.
Has anyone else experienced the joint pain moving and can/will/might it go if I keep at it?
Good for you Mary !Quality of life is very important and when the drugs make your life totally miserable you do wonder whether it is worth just taking your chances ,I think most surgeons would agree with your decision.Taking the drugs are no guarantee that you won’t get a reoccurrence ,they are doing research to pinpoint exactly who benefits from the meds,good chance that alot of us are taking them with no real benefit,All the best.Jill
I have been on anastrozole since end of April and last week has been hell. I feel 100 years old. My hands seize up. I feel sick. Fatigue is incredible. Loss of appetite too. Memory is shocking as is concentration. I’ve now got palpatations and short of breath not sure 8f that’s anxiety and a silly tickle cough. Saw onc yesterday who said come off for 4 weeks then see how you go. I’m low on vitamin D and iron too. I know I need to take tablets but the s/E are affecting my day to day life. I had to leave work this afternoon it became all too much
Having been taking Tamoxifen fir the past three years a blood test has now confirmed that I’m post menopausal so they want to change me to Letrozole. Having heard about the side effects and my hot flushes are already horrendous I think I’m going to decline. My cancer was so small stage 1 and I was border line to have the Tamoxifen. I want to live my life not be unable to get around and be in pain…is this wrong?
Hi T,I think there is only a small gain from Letrozole over Tamoxifen post menopause so if you are ok with what you are taking I don’t think you are taking much of a risk ,I know a few ladies who are taking Tamoxifen cos Letrozole didn’t agree with them.May be worth asking this question in the ask the nurses section ,they may be able to give you more information.Jill.
In response to whomever posted about finger nails: My nails are doing all of that!! How does this relate to the health of our bones!?!?.
Why are we all suffering so much after all we have been through when nobody really knows if these drugs are helping us?? I debate with myself every time I take a pill! The Anastrazole nearly killed me do I took a break ( three weeks) pains went away. Now I am on Letrozole ( only nine days) but my nails crumble like a pie crust! They are always tearing at the touch of any fabric . It seems petty to complain about nails when so many have so much worse to endure but I have been disfigured enough because of cancer! Sore and bloody fingers may seem petty but believe me they are not!! I am hoping I will be lucky enough not to have bone and joint problems but if my nails are any indication of bone health, I may be in serious pain soon. ?
I have been taking Letrozole since June 2012. I tolerate it quite well, but sometimes the joint pain and low back pain are quite bad. I use painkillers and anti-inflammatories to ease the pain. I came off the Letrozole for a month in December 2014 for a month and then tried anastrazole. After 2 weeks on it I felt truly awful. I had bone pain in my legs and was so ill feeling I had to go to bed. My breast care nurse told me to stop taking the anastrozole immediately. She conulted the oncologist who said to go back on to Letrozole. I manage the side effects and am rarely inconvenienced by them. Next year I will be taken off Letrozole and I am apprehensive about the next drug. Probably Tamoxifen. Good luck!
Hi Rory,
It can be alarming to read about potential side effects, but many women are fine on hormone therapy & tolerate it well or at least find any side effects manageable. Understandably, those with problems will report it, which can be anxiety provoking if you know it is part of your treatment plan.
If you haven’t already, then do discuss with your team who will advise, but ultimately how we respond can only be established by trying it.
good luck
ann x
I’ve been on generic Letrozole for the last 2 years and am due to see Oncology about switching to Anastrazole because of male pattern baldness. I am waiting for blood test results to see if Letrozole has triggered an epigenetic response in my own genetic code - I have 4 brothers with male pattern baldness.
A bit concerned that Anastrazole may be more painful than Letrozole? I have found that I get least side effects with Dr Reddy’s Letrozole; Accord version leaves me with a constant dry cough. I had my first go with Cipla this month and I never want to touch it again- feels like being coshed and the hot flushes are constant.
I took anastrozole for 3 years but the original brand arimidex …it was a lot easier to tolerate than letrozole that I take now …I have Accord brand now as a repeat prescription.
Thanks for posting that Lovemygarden, it’s good to hear positive experiences as well, as understandably, those having problems will post, not usually those who are doing ok with it all.
ann x
I, too, wonder if the terrible state of my nails is indicative of what might be happening to my bones with Letrozole. I had a satisfactory bone density scan when I started taking it, six months ago, but my nails were fine then.
Hi all.
I was diagnosed 2yrs ago with HR 8 ductile carcinoma, and went on Letrozole to shrink it because it was going into my pectoral muscle… i had side effects at first, and they got quite mild, and stayed that way…I had a lumpectomy last October, then Radiotherapy JanuaryFebruary. Since then the bone pain has seriously kicked in, as well as all the other symptoms, and I don’t know if at 70 , I can put up with it all. Has anyone had the same experience as me?
Hugs
I started on Letrozole for 9 months but it made my joints ache all night long. I changed to Anastrozole which causes joint/muscle pain all day long but eases when I’m asleep! Some days I just want to stop trying to walk - I feel I should be in A
wheelchair! My legs feel like lead and it’s s struggle to walk. I saw the consultant today and I told him I could no longer tollerate the pain. I prefer quality of life to content. I’m 60 in May but my body feels 90 at times! I’m having a break from the tablets. I may go back on Letrozole. .