Dear All, I am due to start Letrozole soon as deemed at high risk of recurrence post surgery. It is proposed that I take this for ten years…a prospect I find both daunting and depressing as there are so many scary stories on the forum about awful side effects especially joint and muscle aches. Does anyone have any good stories to tell me about how it hardly made an impact or caused much in the way of side effects. I am 66 years old and feeling very afraid about popping these pills down my neck. I’ve already asked if I can take them every other day as I understand that half the dose is just as efficacious according to the SmPC. All advice and experiences gratefully received. Regards Tulip29
Ive been on letrozole for 18 months. Crescent = no side effects but Accord = joint and bone pain and other side effects. Crescent is hard to come by just now so may have to try another make.
Hi tulip
I was on letrozole for 4 years and it didn’t cause me any problems for a while. I think the general consensus is that the Accord brand is the best, if you are able to get hold of it. The larger chemists tend to be able to do this.
For me, personally, it did affect my bone density after a while and so when this became a problem, I was switched to tamoxifen.
Letrozole can impact the bones, so they will do a bone density scan every two years, and you will probably also need to take calcium and vit d.
We all respond differently to these drugs, so it tends to be just a case of try it and see. Just bear in mind that most of the side effects wear off after a few weeks.
Good luck 
Sue xx
Hi I have been on Letrozole for about eighteen months and have had no problems at all.
I had a bone density scan before starting on them.
The only thing I worried about was my hair thinning, but it is fine according to my hairdresser.
I was nervous about starting Letrozole, I have to say. I have only been on it for about 4 months, but haven’t experienced too many side effects yet. I have mild hot flushes, mild insomnia at times and mild joint aches.
I know some effects will take longer to become apparent (eg bone density), but so far so good x
Hi Tulip
I am same age as you, 66. I started Letrozole in October 2022 and have been on it since. The symptoms are hot flashes, achy joints and insomnia. But I don’t know whether insomnia is caused by abemaciclib which I am also taking, as similar to you I have a high risk of recurrence. I was initially told that I have to take letrozole for 5 years and now was told possibly 10 years. Sigh…. Ah well, if letrozole can give me 10 years, I think all the adverse side effects are well worth it? What are your thoughts. Hugs to you.
Sign.
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I’ve been on lupron and letrozole for a year. No huge side effects to speak of.
I am 65 and are on Letrozole too. I have occasional joint pain but not severe enough that i would stop taking them. Just feels like a very annoying muscle ache/strain. Also have flushes but bearable.
I agree with the previous persons comments that they vary based on the supplier. Crescent and Accord ok for me but side effects worse when supplier was from Netherlands !! I order mine online via NHS portal and ask for preferred supplier but as they are in short supply at moment we have to take what’s available.
I certainlg wouldnt stop taking them as i think my side effects are bearable.
Good luck 
Hi Tulip,
I am 68 and have found the side effects manageable. I have been taking letrozole for 6 years and do more exercise now than before I was diagnosed. I used to take glucosamine for joint pain prior to starting letrozole and have continued to do so, increasing to the maximum daily dose.
My bone density scans have come back fine but I decided to take calcium and vitamin D supplements as a precaution anyway, and I use a LadyCare magnet for the hot flushes which has lessened the frequency.
I agree with what others have said about the brands, it does make a difference, I take Accord but we’re all different.
Krysbe
Hi Teresa,
Light bulb moment here. May I ask if it was the Accord brand you had problems with?
Thank you
Krysbe
Sorry for high jacking your thread Tulip
No bad problems with Accord ! Slight flushes no aches
I have been on Letrozole for about 3 months and like you was very worried about side effects as never had to take any regular meds before. I just take it first thing in the morning so it is out of the way and touch wood never had any side effects x
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I have taken letrozole for 6 years. I have found over the years it depends on the brand. Some i could hardly walk and in pain. I told the doctor who advised to use Accord or Bristol. Both i take and have no pains at all. So experiment. You take them because they are good. Good luck
Awaiting my prescription for 5 years on Letrozole and oncology appointment following mastectomy 3 weeks ago. Already feeling aching joints just reading about others’ experiences.
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No good stories Tulip29, but for me the side effects such as muscle aches, joint pain and gas pain are manageable. I was diagnosed at 69, almost 70 (now 74) and will be taking letrozole until April 2030. 
Hi @Tulip29. I took Letrazole for 5 years many years ago and the only side effect was hot flushes. I am now on it again indefinitely and the hot flushes are not as frequent. I have some joint aches from time to time but probably arthritis. Otherwise all seems ok and I wouldn’t be worried about taking it. If you do get side effects you can always stop taking it (only on doctor’s advice/agreement) and try something else. Best of luck. xx
Hiya ! I have been on Letrozole for nearly 2 years now. Although I already had arthritis I haven’t noticed a worsening of any joint pain. I am lucky maybe that I don’t get hot flushes with it either. Please give it a go and.try not to worry, like others said you can always ask to switch it and they will keep an eye on your bone density. I was worried about it as they found I have osteopenia. Will see when I get my dexascan soon what that shows . In meantime I am trying to get on with my life !
I’ve been on Anastrazole for 41/2 years. My end date is 4/22/24. In the beginning I too was afraid of what might happen, but my Oncologist said when I told him I might want to quit, said you don’t want to do that. Side effects haven’t been bad. I do know if I quit exercising or eat poorly I tend to see some problems. Achy joints, fatigue- never had hot flashes. Just had BCA test on my tumor from 5 years ago and it shows I can stop meds at 5 years which I am glad to do. I don’t like taking medication if I don’t have to. If you have any questions be sure to check with your Oncologist, Nurse Navigator or nutrition counselor. No question is too small and it helps to ease your mind. Everyone has their own journey and staying in touch will help too. I wish you well.
Hello everyone
I too am taking letrozole for 4 years now. I am high risk because I lost my brother and 2 sisters to cancer. I do have side effects like bone and joint pain, insomnia. I also get very tired but if I don’t take it there is a good chance that the cancer could come back. This is why I’m willing to put up with all the side effects. You should take it. It really will help you. My oncologist also told me to take calcium carbonate and vitamin supplements. I’ve been through cancer twice now and am doing quite well. I pray that you and everyone are doing well.
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Hi Tulip
I have been on letrozole for 8 months and I am finding the side effects manageable. I have intermittent joint pain - particularly my fingers and hot sweats now and again but I try to keep active and I find this really helps.
Best wishes
Bookie
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