@welsh_lady1 what supplements are you taking please? I’m taking zinc, magnesium citrate and probiotics - all for my lupus - and now prescribed iron for anaemia. I am currently taking Sun brand of Letrozole.
Wishing you well x
Hello nannabee
I’m taking Turmeric with black pepper for my joints and Omega 3 for heart & brain health and cholesterol as my cholesterol was already quite high before starting Letrozole.
Good luck to you, hope all goes well for you.
Sorry …… also prescribed along with the Letrozole was calcium and vit d3 supplement xx
Thank you for the info, forgot I’m also taking omega 3 and been prescribed Calcium and Vit D. So more or less the same. However there have been a couple of threads on turmeric and it’s considered a definite no no with cancer related drugs.
Ive massively improved my diet and practice yoga a couple of times a day so am doing all I can.
Wishing you a continued peaceful and happy time xx
1 Accord
2 2.5mg
3 Indigestion, stomach ache and wind
4 Two and a half months
5 Lunch time with food
I am 81 and am only just experiencing occasional hot flushes but they are very mild
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Hi all
a) Accord tried Sun ( felt more achy, Accord was out of stock, pharmacy has it listed as my preferred brand)
b) 2.5mg
c) Yes. Hot flushes, achy joints, stiff fingers, (possible carpal tunnel in left hand), vaginal atrophy, urgency to wee, brain fog, fatigue.
d) 7 months
e) 7:30pm. I tried taking an hour earlier and earlier over a few days as my hot flushes were worse between 7pm and 7am and my sleep was disturbed. I even tried at lunch time and first thing in the morning. It made no difference so back to 7:30pm).
I wrote this
Hope it helps 
Tried out practically all brands of Letrozole.
Accord seems best for me. Cipla brand seemed the worst for me.
2.5 mg.
Period type pains for the first week or so. (Oncologist very surprised at this) but no bleeding. After that completely ok.
Terrible leg pains to begin with which subsided after about six weeks, however joint pain in legs gradually getting worse. Now after 5 years I still have no trouble walking but in the last six months I have found my knees will not let me climb or descend stairs without real pain and I find it really difficult to get up from an armchair. Knee joints really weak now.
Been on Letrozole for just over 5 years with another 5 years to go.
Have always taken it at night as oncologist suggested. Taken with water.
I am now 73 years old. Started Letrozole when I was 68 after mastectomy and lymph node removal, chemo and radiotheraphy.
Over the past 5 years I have noted the ingredients in the different brands. Accord and Glenmark seem to have ingredients most similar to the original Femera Letrozole.
Hope all this information helps with your survey, please post the results on here eventually.
Sunshine 21
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Hello,
My first post here, looking for info on letrozole myself. I had bilateral progesterone and oestrogen positive breast cancer luckily stage 1 grade 2 not in the nodes. Only found in my second breast because I opted for a reduction. Was advised to take letrozole for 10 years after treatment finished but had achy knees already due to no hrt so oncologist suggested tamoxifen first… awful emotional mess within a month so now trying letrozole
I’m on Accord now on 2nd month but box is different to first month so I think that was a different brand
2.5mg p d
Yes side effects now bad, insomnia can’t sleep without zopiclone, bad achey knees and shoulders, low mood
Am wondering whether it’s worth feeling so rubbish when I felt so well and exercised regularly before. Is quality of life more important?
Took tamoxifen 1 month and now Letrozole only 6 weeks
Please tell me it gets better! ?
I take mine in the am along with a whole load of supplements to try mitigate.
Bea
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There is no definitive answer to your questions @bea1 . With regard to the side effects of Letrozole, I’d say 6 weeks is too early to give up on it as the SE can die down to manageable levels after six months or so. If they don’t, then you could have a discussion with your oncologist about trying Exemestane as some women find it more easy to tolerate than the non-steroidal AIs. I was prescribed Letrozole for 5 years as my personal profile suggested any more would be over-treatment but you’ve been prescribed adjuvant endocrine treatment (AET) for 10 years so your personal profile must suggest an obvious benefit to you. With regards to the subject of quality of life, my view boils down to consideration of whether you can accept the risk of metastic spread. No-one can predict who will get secondaries and who won’t which is why everyone with er+ cancer gets prescribed AET even though many individuals would never have needed it. AET is not a 100% guarantee that an individual will not end up with a distant recurrence but it has been proven to be a very efficient prophylactic against spread. If you choose not to take it, and many do choose this, if at some indeterminate point in the future - could be months, could be years, could be decades if you’re young enough - you do develop secondaries and are subject to much more challenging treatment to keep you alive, will you be able to accept the decision you made? I am not saying this to frighten you, it is a question that we all, myself included, have to grapple with if we have side effects and it is not easy. If you do decide to give AET up, please PLEASE discuss it with your oncologist first. No-one can make you take it and your scheduled monitoring will continue but your records need to show what treatment you‘ve had and for how long. At the end of the day, it is a gamble which may or may not pay off, it comes down to how risk averse you are.
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I’ve been on Accord brand letrozole for five months after bilateral cancer (other side also originally missed on mammograms and ultrasound). Nodes clear.
I’m supposed to be on it for five years followed by five years tamoxifen but I want to stay on it for the full 10 years - my consultant said on Monday that if I want to stay on it he would say 8 years - but I figured that’s an argument for down the line when other treatments may well be available.
I agree with what’s said before that you need to give it a good few months to settle. I have had a range of side effects but none so bad that I would give up. I find exercise helps considerably with the joint pain and I’ve recently started having acupuncture for joint pain and that has been amazing.
I take mine at 6pm with the CalciD and I also take max strength glucosamine and chondroitin. I also take one tablet of mirtazapine at night to sleep and I sleep like a baby (after a lifetime of insomnia).
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a)which brand of letrozole - Sun Pharmaceutical
b) 2.5 mg
c) yes
d) early Dec 2022
e) 6 pm
Side effects - stabbing pains in knee and ankle joints, fatigue
Seagulls
I discovered 7 out of 10 women on letrozole get arthralgia aka rheumatism
a) Sun Pharma, Glenmark, Crescent (whatever the pharmacy orders).
b) 2.5mg
c) Yes: muscle pain, tendon pain in hands and arms, tiredness, quite severe depression, pain with intimacy and inability to have normal relations with my partner, ADHD-like symptoms, inability to tolerate frustration. Pain is less bad with Sun Pharma than with the others.
d) 4 months.
e) Morning with food
I’d add that I wasn’t menopausal before I started treatment, and have never had any perimenopausal symptoms, so the side effects have been an extra shock to the system.
Hope this helps.
Started Letrozole May 2024.
2.5mg
Sun up til now. But new prescription is Amarox.
Side effects at first we awful.
Nausea, aching joints - hands at first now right knee, depression, disturbed sleep.
BCN advised take Glucosamine. Pain more tolerable.
Also take high dose of Vit D, Omega 3 and MSM.
Have decided on my own bat, not advised BCN to stop it to see if symtoms improve.
I do hand and knee physio exercises which have helped my knee, not my hands so much.
I am supposed to take Letrozole for 5 years, at least. Cant see me lasting that long on it.
I’m 79. Had lumpectomy. No lymph node involvement.
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@sproghead Welcome to the forum.
I’ve been on Letrozole for 13 months, I spoke to my oncology team and they have agreed a 4 week break due to side effects. Coming off will determine if it’s the Letrozole or general wear and tear (56 this month). I had an MRI in October for neck pain which showed 2 bulging discs and wear and tear. The doctor said my treatment (chemo/herceptin) could have impacted the joint issues I already had.
I understand you are older but I would call your breast care nurse or team to talk it through. I was told there are other option’s Anastrozole, Exemestane or Tamoxifen ( if no history of blood clots)
I forgot to say …I take it last thing at night.
Also a side effect that I find distressing is
that my hair has gone so thin you can see my scalp in places.
I’m on letrozole, have been for 6 months. Use Accord brand. Side effects are:
Crippling joint pain, so much so that I can’t sleep on my side anymore, walk like an 80 year old when first get up. Also now have trigger finger and swollen hands every morning. I wil take it for 1 year and see how it is. It’s not just that I want to stop ET, I actually want HRT instead. So almost doubly worse. I feel like we have to make a choice between actually living a good life or taking endocrine therapy. Once oncology have done their bit they don’t want to know. Anyway I hope these answers are being logged because we need better choices in place.
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I’ve been taking Accord Letrozole 2.5mg for 9 months ( with a gap in the middle while I was on chemo). I haven’t had a single side effect since the day I started taking them. I think I must be a freak. I take it in bed every morning with a mug of green tea. Half an hour later I take the AdCal.
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I’m so pleased you haven’t had any side effects from Letrozole, always important to have a balanced view. So many of us want help with issues.
I’m hoping for some relief after stopping for a week, hips and shoulders feel a bit better.
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Given that I’ll be taking Letrozole for at least seven years I’m keeping my fingers crossed that the cumulative effects don’t suddenly pop up when I’m least expecting them.
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I’ve been taking sun brand Letrozole since May 2024 with a couple of different brands sometimes. The first six months were a nightmare and I had every side effect going. My team must have been fed up with me threatening to stop it and I did have a short break at one stage. Upon trying to take it at different times I settled for last thing at night. After six months the side effects all started to ease and now at 9 months I have none, I’m even taking it first thing in the morning and this month Sun weren’t available so I’m taking Accord which hasn’t caused any problem. At almost 79 I did seriously consider was it worth taking but am glad now that I stuck with it.
It’s a completely personal decision and one that you must insist on making even when your medical team try to persuade you otherwise. I’d say stick with it but know after that first six months it’s completely understandable that some don’t.
Whatever anybody does, I wish you happy, carefree days and peace and tranquility xx
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