a) Which Brand of Letrozole do you take
Sandoz (in Australia)
b) What strength is Letrozole prescribed?
c) Side effects Yes or No
Yes. Aching ankles and hands for first 6 mths
Vaginal dryness and soreness - continued
UTIs more often
Weight gain
d) How long have you taken Letrozole
4 years
e) Particular time of day you take your Letrozole
Bedtime
Hi. On letrozole since finishing radiotherapy in feb 21. I have had a lot of brands and was actually crippled with bone pain from head to foot, over a year ago i got Cipla and the difference was night and day. However i cant get it now pharmacy have tried. Ive had accord which is the best of a very bad lot. Still have sore shoulders arms wrists hands feet ankles znd hip and small of my back. Last week i was given zamorax. Oh dear me i went from being fine to a bubbling wreck i couldnt lift my arms my ankles and feet bones were burning and my hands. I at oresent need my hands and shoulders because unfortunately the biophosphonates ibandronic acid i was taking damaged my normally string bones rather than strengthening them against what the letrozole does. I got necrossus if the jaw. And i had such painful legs and hips. Then suddenly out of the blue my femur snapped in two. I had to go for surgery to have it repaired nailed and screwed. They told me next morning my other keg was going the same way totally due to biphosphonates so they had to put a rod in my other femur. I had two broken legs. Its tajen me 8 month to get back to where i am at just now, and rely on my hands to oush me up and my shoulders to haul me about the letrizole is making this so painful.
I didnt take the amorax fir a day. My family actually took them back and got me accord which i am taking now. I was on the verge of stopping altogether, but should God soare me i am on them until 2030.
I had deca scan and no sign of osteoporosis or ostopenia .
Thats the letrozole story.
Taken 2.5 accord at 9resent in morning.
Just to add i took a reaction to doxatxel and picitaxel and its damaged my lungs left me with pulminory fibrosis.
Therefore i will warch what i take now.
No biphosphonates, and only certain letrozole.
Im on meds for life now because of chemo.
I know it does its job . And can cause other health problems.
Good health and best wishes to you all
Oh @granC what a tale of woe. No-one deserves such bad side effects. I do hope you get some better luck soon.
Hi
A) Accord, since September 23
B) 2.5
C) 6 months
D) Morning around 7am along with other medications
Side effects disturbed sleep patterns but hit and miss, feel like a cripple in the morning coming down stairs but better after movement. Hips soon stiffen after sitting, knees fine, ankles hurt initially but settled although the side of my left foot can be painful at times. Had small amounts of pain in left wrist.
DX scan showed osteoarthritis in my spine. Meeting with oncologist to discuss Bisphosphates after dental appointment. Taking calcium tablets daily.
Mood good and never felt better in myself.
Hope this helps x
Hi lovely Ladies. Hope you are all getting on ok with the Letrozole pills. I have been on these now for 5 months.
A. Have been given Sun Pharma, Accord and Amarox twice. Seems to change every time. Found with Accord I had the most side effects. Aching in shoulders and hips, hot flushes night and day, hair thinning. Amarox has been ok lately. Still get the hot flushes, especially during the day but only last a few minutes. Not sure if pills causing the aching, as I have b12 deficiency which causes aches in joints too.
B. 2.5mg still.
C. 5 months now.
D. Still take at about 9pm every evening. Hot flushes start just after taking them, but subside after about 1/2 hour. Not too bad at night now which is good.
I gave up on Letrozole Friday.
I can’t exercise without becoming so dizzy 1 breath away from passing out with BP of 97/47.
Letrozole Aromatase Inhibitor 2.4 mg By Prescriber - Dr. —, — Oncology — , TN (began 2/20/2024 to ended 4/5/2024)
UPDATE:
Was able to complete Physical Therapy Monday.
Took mononitrate after exercise.
Took regular heart medication approximately 2 hours beforehand.
Relieved this is over.
I will not look back.
Looking forward in prayer that cancer remains gone.
I will know the last week in July when I get another 3D mammogram, sonogram, and MRI if the cancer remains gone.
Hoping the neuropathy in legs goes away caused by Letrozole and the lipids start going down.
Upshot:
Slept somewhat better last night.
Should get my dopamine booster pills soon.
Letrozole kills dopamine levels.
Hope mine level does come back.
Without dopamine we head for Parkinson’s and dementia.
Pray for me ladies as I will pray for you also for complete healing.
~ MabelLean
Hello.
I am currently taking SUN brand of Letrozole but due to change to ACCORD brand from Sunday. For no other reason than it is the brand sent on my last repeat prescription delivery.
2.5mg tablet once per day.
Yes, I’ve had varying side effects which include painful knee/foot joints, night sweats, more frequent bowel movements, a few occurrences of what seems like uti’s. I’m also not really sleeping through the night, with frequent visits to the loo needed.
I’ve been taking Letrozole since my mastectomy at the end of February and have been advised that I will be taking it for a total of 5 years. In addition I am also taking Ibandronic acid tablets first thing in the morning.
Up to the 2nd of June I had been taking them at about 7pm but since speaking to a breast care contact yesterday, I have bought it forward to 5pm to see if that helps with sleep etc.
Having said all that I do want to stress that my treatment and aftercare has been great and I’ve had lots of useful advice from the professionals looking after me, so I’m thankful for that.
Hope that helps with your survey
Brand is Sun Pharma
Strength is 2.5mg
Side effects are flushing, carpal tunnel in right hand, vertigo, nausea, headaches
Been on for 5 weeks
Take in evening
[quote=“Silver6, post:1, topic:104834”]
a) Which Brand of Letrozole do you take ie Accord;
Sandoz (I live in France)
b) What strength is Letrozole prescribed? 2.5
c) Side effects Yes or No. yes, to start with, mild nausea, very dry mouth, sore knees, water retention. Hot flushes but these started after stop ping HRT. Maybe slightly worse but can’t be sure. All of these have improved as I am exercising a lot, I did before cancer but now aim to do 5 weight training/HIIT sessions per week and walk most days. It’s helping hugely to manage my mood and control of weight etc. and is making the whole thing bearable.
d) How long have you taken Letrozole 2 months
e) Particular time of day you take your Letrozole
[/quote] evening but considering morning if it might help with night hot flushes.
I have been taking the Accord brand of Letrozole (2.5mg) for nearly 3 weeks. I take it at bedtime and haven’t noticed any side effects to date although I realise it’s still early days in the scheme of things. However I am also taking supplements to mitigate possible side effects.
@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
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
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
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.
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).