Has anyone else suffered severe leg pains and tiredness whilst taking this tiny tablet which makes me feel dreadful. The aches in the joints and pains in my legs have been debilitating but no one clinical seem to want to admit how severe this can be. I’m on glucosamine, cod liver oil, calcium, magnesium, vitamin c and low dose vitamins d. Paracetamol
And ibuprofen do not touch it, only codeine helps but brings its own SEs. Any experience of this drug that anyone is happy to share with me will be gratefully appreciated.
I was on Exemestane for 4 weeks and I practically got every side effect listed/connected to it. I changed over to Letrozole [have been on it 2 weeks tomorrow] and although I get some side effects it’s better than Exemestane. I don’t know if the lack of sleep through the night is due to the painful leg muscles and painful Trochanter bursa sac which causes pain in the hips when irritated.
I do feel tired a lot of the time & lethargic and do have trouble sleeping through the night which was the opposite to Exemestane. My joints are painful to touch and muscles and I find it hard to climb stairs with the pain in my knees. My oncologist did warn me about the aches and pains and because of the link to painful joints I have to have regular Bone Density Tests.
I just take Oramorph [morphine] for the aches and pains and when really bad I take 2 Paracetamol as well. I cannot take Ibuprofen and certain other drugs as I am on Warfarin. The worst SE I find is hot flushes, some are really mega, I take Sage Leaf Capsules for those, they do help but don’t eliminate them totally. One peculiarity I have managed to link to taking either Exemestane or Lerozole is the hot flushes occur when I am needing to go for a wee. I have done a Google search on this and it’s amazing how many other people have found the connection too. :womansad:
Thanks for sharing. I don’t suffer many hot flushes I seem to get chills! Good luck with your treatment.
I suffered on letrozole for 21/2 years but it stopped working because I developed another cancer. I had really bad hip knee and finger joint pain. I’m now on exemestane and it is not half as bad. We all get different levels of S Es. I’m so glad enemies tame is better because I didn’t think it would be.
Hi, I started on anastrazole, took it for 4 weeks and side effects started on day 1 and got progressively worse, hot swollen joints in toes knees and shoulders neck arms and fingers - just awful, also numbness and tingling , 1 oncologist dismissive, stick it out he said but another listened and changed me to Letrozole, started off better, now had it for 2 weeks but it’s all coming back, struggling to sleep, painkillers not working. Can’t bare the thought of this for the next 5 yrs!! So unfair after all we’ve been through , I was so raring to get back to normality and enjoy life and this feels like a massive kick in the teeth!!
Still I’m here and alive so just have to suck it up and get on with it!
I have been on letrazol for about 9 months and not had any side effects from this drug
was reading your thread and thinking, these things are really scary, arent they?
i took Tamoxifen for about two years as part of a double blinded trial in around 2001/3… The only symptoms I had were spotting pv. As I was post meno anyway…after the trial(5 years) I was put
on and stayed on Letrozole for another ? 4 years…I was told I could stop it then if I wanted to…
…the bc came back again…now I believe they are told to stay on Letrozole for at least ten years.
letrozole had its own side effects…but if id known, I would have continued it…have seen that other ladies had the same experience as I.
Please do check with the onc/breast care nurse to find the very latest advice before stopping…the very thing you really dont want is a recurrence xxxx
Hi PaulaJane,
I was on Tamoxifen fir three years and then put on Letrozol as it was supposedly even better for preventing recurrence. However, this medication is giving me multiple muscle, joint and bone pain. I’m 56 and was extremely agile and mobile - I’m now quite infirm and struggle with walking and getting around - it’s shocking! I sleep erratically , seldom through the night, have had bone density scan and diagnosed last week with Osteopenia. Am often tired and am convinced I’m dying! Reassigned g all these threads has made me realise it’s clearly the medication. I think I’d rather take the cancer risk as this is ageing and deeply depressing. I’ve become a mega hypochondriaccaa each day I awake with more aches & pains oh increasing intensity, very worrying. At least now I know why. Think I might quit with it for a month and what happens. Otherwise I’m
going to die prematurely of old age. I’m taking magnesium & fish oil, zinc and reasonly hesltjily - I do drink wine once a day to ease the pain as I’ve become very depressed with all this. Any advice welcome.
I’m having severe pain in wrist, fingers, hip, shoulders after 8 months on Letrozol. I’ve only just figured out its side effects from reading all the threads on this forum. I’ve been convinced it was accelerated and sudden ageing, or bone cancer - which it is not as I’ve just had a bone scan. I’m going to ask GP if I can go back on Tamoxifen as the side effects were headaches, severe muscle cramps in legs & feet and hot flushes! All nasty but The Letrozol ones are considerably worse. Might just ask if I can have a break & see what happens - this is so dire, it’s changing me physically in an extreme way and giving me constant pain. I feel I need prescription sleeping piles and morphine!
hi paula i have been taking letrozole for two months n yes the pain in the legs and arms are bad but i have some great pain relief i take 300mg gabapentin 3 times a day 200mg of tramdol 3 times day n also if pain is really bad i take 2.5 mls of oramorph when needed , i lso have real bad hot flushes all day but wors after dinner time i sit next to the fan n wear very light cotton clothing x i hope you feel better with the letrozole soon hun xxx
Hi I have been taking Letrozole for 8 weeks, I was very worried. I have hot flushes but not too bad, i do get joint pain but already have fibromyalgia, mood swings and get very tired. I can cope with it as I feel very lucky my cancer was caught very early. I had four biopsies a lumpectomyand finally a mastectomy. i think my biggest worry is thinning hair I find myself checking if its gone any thinner. I just want to see my granddaughter grow up she is seven. I have benign cells in my other breast. I wish everyone battling Cancer strength
I joined this forum because I am suffering with severe leg pains - feet feel as if the bones are broken and my legs feel as if I have strings tightly pulling with sharp pains, aching and spasming when in bed. I wake up every hour and have to stretch out my legs as the knees hurt so much. I did have some problems with my knees prior to cancer, but now I hobble about and standing still is so painful for more than a few minutes. I am taking supplements like you and paracetamol in the daytime with paracodal at night, who helps a bit sometimes. I was offered other tablets to help at my first annual checkup but warned that they too have side effects. Have heard that acupuncture could help - anyone experienced that helping?
I was diagnosed with a 70mm Grade 2 ER+ Lobular BC in June 2016, I had a mastectomy in Sept followed by Chemo and i am due to start taking Letrozole when my Rads have finished (end march) and will take them for 10 years I have also been put on Ibandronic Acid tabs for 3 years to help protect my bones there was a study puplished in the Lancet last year about the benefits of this drug, it is normally prescribed for Osteoporosis but has been shown to help post menopausal woman with ER+ BC, the health authority I come under are happy to prescribe them but not all are, it may be worth checking with your Oncologist.
I was also advised to take Glucosamine, has anyone else been recommended and if so is it working for you?
Mary x