Letrozole 2.5mg

[Honeystride]

Hi ! New poster so please be kind. I’m 3 years post BC. I was prescribed Tamoxifen which I took for 2 years & then stopped as the lack of sleep was making QoL awful.
Since then I’ve had an oophorectomy & at my 3 year cancerversary the Onc prescribed AI ‘s - Letrozole 2.5mg.

my question is side effects- I’m one week in and the headache & pins and needles are hard going. Does it calm down at all???

ax

I was on Letrozole for 6 months (ish) I can’t remember exactly. The S/E were so awful I came off it and then went on to Exemestane. While not perfect it is infinitely better than Letrozole.

Watching with interest because after 2 years on letrozole I'm starting to get a lot of joint pain, and muscle pain and spasms. I've tolerated it well up to now though.

I've been on Letrozole for almost 7 years after breast cancer. Ten years is recommended (it was for me) but at my 5 year check was told that results are looking very similar for after 7 years so I will wait and see this year what happens. To be honest I don't know what the side effects are anymore - it's been so long now that I'm just used to feeling the way I do. I think generally it's like menopausal symptoms multiplied. That along with joint pain especially when standing up and walking after sitting down or sleeping. Takes about a minute or so for the horrible pain to go and for me to walk kind of normally. Sleep is OK but joint pain when waking during sleep can be difficult. I know I have mood issues as I could kill my DH several times a day for eating, drinking etc. noises can take me over the edge. I have friends of a similar age who don't take it and they have sleep issues, joint pain and various other ailments so I don't feel worse off tbh. I'm late 50s. I don't dwell on it and function very well and enjoy my life so it's just one of those things for me and it's better than the alternative (more cancer and possibly stage 4) whichever way I look at things so I've just put up with it.

I've been taking it for about 4 months now - the only side effects I've experienced so far are the occasional hot flushes.

I’m interested too. I finished active treatment in Jan and have been on letrozole for about 6 weeks. I started OS a month before and was having joint pain from that, but letrozole has made it a lot worse.

I took Tamoxifen initially with few side effects and those that I did have were likely caused by being forced in to menopause. I was then changed to Letrazole. I managed it for 12 months before being switched back to Tamoxifen. The joint pain was horrendous. I was 48 and hobbling round like an old woman. I ended up having to take ibuprofen before a Pilates class because it was too painful otherwise.

I had breast cancer & am nearly 3 years into 5 years of drugs - firstly I was on Letrozole - I got used to the flushes etc but the joint pain was awful - I was switched to Anastrozole - still get joint pain but not quite so severe

thankyou all so much for sharing your stories with me. I am 3 weeks into Letrozole & the pins & needles feeling is coming & going.

Watching with interest - i'm 3 years post BC and on tamoxifen, but booked for an oophorectomy in 2 weeks and will then be switched to Letrozole. Slightly anxious about the side effects mentioned on this thread, particularly joint pain.

I’m 5 years in….5 more to go🙄….first year was hard ….aches…pains….sweats …sleep disturbances….brain fog….nausea…..gastritis…..recurrent UTIs….think I just got used to feeling a bit shit really after that….the last year I’ve noticed the side effects more….I’m 60 and sometimes feel 100….I haven’t gained weight ( I’m 9 stone at 5ft 6) ….I have neuropathy in hands and feet ….burning numbness really….but put that down to chemo as that’s when it started….but my cancer was 7/8 estrogen receptive…..and at my 5 year review it was advised I continue if able….so I crack on….I am prescribed Hiprex and vaginal estrogen….so no longer get UTIs ….my cholesterol has gone up which is a side effect of letrozole…..from 4.8 to 6.5 ….which is a worry….but gp doesn’t seem concerned ….I have 6 monthly blood tests…..I also have yearly bone density scans …..I have some osteopenia in one hip ….otherwise ok….so that’s good…..I would never consider not taking it though

I’ve been on letrozole for 4.5 years and have been told to stop taking it in September this year. I’ve had sleep problems, hot flushes, weight problems, and lethargy was a problem, but got used to it all, and now achy joints a bit. Never had pins and needles. I’m looking forward to coming off them to see if I feel better.

I’ve been on letrozole nearly 2.5 years. Brain fog was terrible at first but has improved. Joint pain seems to be on and off and move around my body! I get more tired than I used to and definitely have to plan, prioritise and pace. I waver between it’s OK to I can’t do this anymore! Sometimes my thoughts spiral but I just tell myself it’s the lack of oestrogen and it calms down. It feels like it’s on a mission to dehydrate me so I use lots of moisturiser, including vaginal. I take glucosamine, chondroitin, omega 3,6,9, collagen, vit c and the prescribed Evacal. I was advised against bisphosphonates but developed osteoporosis after a year so am now on zoledronate, which my rheumatologist thinks will get my bones back on track. Sometimes my sleep is disturbed but generally it’s alright. I also do lots of yoga and weight training and I think that helps.

I’m coming up to 5 yrs on Anastrazole. One observation is that different manufacturers give different levels of side effects. Also the joint pain can be quite bizarre. I generally notice it in at least one joint but it’s always bilateral. So if one knee is painful the other one is too. The current batch I’m on are affecting my knees and elbows.

I did a lot of reviewing of scientific data, I still do, and discovered that the pain is due to fluid retention in the joint and associated histamine production. I take a daily loratadine ( anti histamine) and also take furosamide ( diuretic). A recent study using diuretics to reduce joint swelling in patients taking AIs showed a significant reduction in reported joint pain.

I also take statins because AIs tend to cause a rise in cholesterol. There are current studies ongoing looking at statins as an additional drug that could be used as an adjunct post cancer. Cancer cells need cholesterol to proliferate so statins may help suppress tumour growth.

I found our GP practice phamacists was the most informed regarding up to date research and was happy to recommend the drugs to my GP.

The statins combined with AIs does cause muscle loss/pain but overall it is minimal risk compared to cancer recurrence. I’m hoping to stop the AIs later this year. My breast cancer was IDC stage 2 HR+ with no spread to lymph nodes so 5 yrs is standard. With stage 2 with spread to lymph nodes 7-10yrs may be beneficial. It all depends on whether I remain NED.

Reading with interest as my radiotherapy finished yesterday and I have my Letrozole ready to start this evening (in theory). It doesn’t make sense to start before radiotherapy symptoms have peaked though. Not sure I should wait either. It seems like such a daunting prospect. It’s for 5 years, so maybe the sooner I start, the sooner I’ll finish.

I stopped HRT in November before surgery in December and it’s been manageable with diet, exercise and magnesium to help with sleep so far.

I’m really hoping this approach will make Letrozole easier to cope with and help with cardiovascular and musculoskeletal problems, weight control and mood. I’ve never had to take medication prior to this apart from Loratadine for hay fever and the occasional pain killers and now, according to the GP receptionist, apparently, I’m a complex patient!

I started on letrozole and was fine for the first year. Then the aches in my knees started and then the depression.
I was changed to Exemestane where the depression went. That was 3 years ago.
Unfortunately the aches in my knees have not gone.

I’m reading with interest. I’ve been prescribed Letrozole but haven’t started it yet. I’m terrified of starting it. Up until my diagnosis I rarely took a paracetamol. I know I won’t be able to manage the side effects I’ve been warned about and I often read about, I’ve got three young children and don’t get a moment to myself.

Has anyone decided not to take it or started and quickly stopped?

Well tablet number one is in, after glancing at it in between watching tv this evening.

I’ll see how it goes. At least there are other options if it doesn’t suit me and the option of Loratadine, furosemide, statins, antidepressants, calcium, blood pressure medication , pain medication etc. I never thought I could end up on more tablets than my elderly father.

I’m just hoping I can feel as good as Davina McCall looks on hormone therapy.

I’m not happy with the six month wait for a Dexa scan, not exactly my understanding of a baseline reading for such an important piece of information. Also, I’ve had to initiate my own appointment with the GP to discuss having a cardiovascular risk assessment as that isn’t routinely done!

@Winderwall I’ve just been reading a thread on Breast Cancer Now discussing not taking hormone therapy. Seems a few people choose not to take it. The thread was started in 2025, titled ‘No Hormone Therapy’.

@roadtowhoknowswhere Sorry to hear about your knee aches. Have you had Dexa scans? Has the medication affected your bone density?

I am struggling with the joint pain on letrozole. I'm embarrassed about my hobbling and shuffling around, the pain in my feet, ankles and achilles is horrible.

I'm also having problems with exhaustion. When I work at home I have an afternoon nap and catch up later. I've never felt so tired, every day. I also seem more prone to infections and the general vaginal deterioration is terrible.

Im seriously thinking about stopping because my quality of life is making me so miserable.

@Dancethroughtherainyes I've had dexa scans. Bone density is good.
Spoke to the consultant when I changed the tablet, they were not concerned and thought the aches will go.
Gp is not bothered. If that's all I have wrong I'll put up it. Unfortunately I can't get in and out of the bath so we are having a fancy shower fitted.
I've tried magnesium, creams and always on the lookout for other things.
Walking is not the problem it's the bending down.

@roadtowhoknowswhere Great that your bones are ok but it doesn’t sound like you have anyone with enough knowledge to support you with all of your symptoms.

I’ve just been watching Danni Bennington talking to Davina, pinned on the Menopause and Cancer Instagram page. Probably the most inspiring and informative piece of information I’ve had since my diagnosis last November.

She’s a wealth of information compared with everything I’ve had so far. She also talks about how frustrating the drip feed of information is from the point of diagnosis and has her own flow chart for management of menopause after cancer that addresses all of the problems and options for managing them.

*Dani Binnington

I was prescribed Adcal D3 with my letrozole which is supposed to help with bone density.
I personally hate the feckers because they’re so chalky.
would love to know if there’s an alternative. Would much prefer to take (another) pill rather than chomp on a chalky mess!!

@Dancethroughtherainthank you I'll have a look at the site.

@drivinmecrazyi only take Adcal D3 4 times a week (Monday Tuesday Thursday and Friday)
It was effecting my kidneys. I did ask if there was anything else I could take and they said it was the best.

I think I'm unusual in this thread because I've been presecribed it for endometrial cancer that has spread to my pelvic nodes, rather than breast cancer.
What no-one has yet mentioned (as it may not be appropriate ?) is whether it has been successful in controlling the cancer or not ? I've been told following my first three month CT scan after taking it that the cancer appears to be shrinking, so I'm happy to tolerate the few side effects I've been experiencing (mainly hot flushes) , especially as if it stops working the alternatives mentioned so far would be chemotherapy or immunotherapy, neither of which sound much fun...