Hi,

I have been taking this medication since May 2017 and everything seemed o.k. until I eventually had a lump and some lymph nodes removed in November 2017 and then I noticed I was sweating excessively and my joints and muscles ached.  My doctor said it was the letrozole and then so did my oncologist, who offered me Tamoxifen as an alternative.   However having been told that letrozole was the best medicine for me I decided to persevere with it and my doctor prescribed an additional medicine to try to reduce the sweating...so far this has had no effect, but I shall give it another couple of weeks before I give that pill a miss.   I don't dare leaving letrozole off, but would love to, just to see if the pains in my joints and muscles go away and the sweating stops.   I am also very worried that the cancer will pop up in other parts of my body...I guess I read too much about it and perhaps should just get on with my life and consider myself lucky that they found it early?

Hi,

i also take letrozole and often feel very fatigued. I’m a keen walker and walked around tenmiles a day. However I began to have severe pelvic pain and was diagnosed with arthritis. No one suggested s link and I was too surprised to ask at the time. Anyone else had similar reactions? 

Arnica oil was amazing for me!! Is the letrozole still managing your cancer? 
Have you asked if they could move you on to different treatment ? 
Sending u all the best wishes

Just found out I cant take arnica oil because of blood thinners. Have been going for acupuncture and it helps with stiff neck pain, but am worried that the letrozole is causing the onset of arthritis so I dont know whether to have a break and see how I feel.  I used to be so fit and now well just rubbish 

Oh that's a shame.  I know how you feel. Can you speak to your Macmillan nurse and see if they can give you anything else to try? 
sorry you feel rubbish ... I hope things improve for you x

Hi everyone.

I’ve just come across this discussion and am glad to chat with others on Letrozole. Sorry to hear about all your side effects.

I’ve been on Letrozole for about 6 months after a lumpectomy for BC returning after 23 years.

It hasn’t made my osteo-arthritis pain any worse, thank goodness, but I do have all sorts of other problems since I started taking it.

I often get a hot flush a couple of hours after taking it at 9pm abd the odd one during the night. 

My hair comes out by the handfull when I wash or brush it, but I still have plenty at the moment.

The most obvious problems are very visible - strong, wiry whiskers on my face and neck and red, spotty patches on my face.

Depression is creeping up on me and I wonder if this is reaction to the way I look or a side effect of the Letrozole.

Sorry for the long ramble! Hope you’re all progressing well with the treatment. x

Hi  I'm so glad to see all these posts I've been taking letrozole for six years and side effects are getting worse. I can't drink even the smallest drop of alcohol as I come out in a rash so I have to make sure when I eat food there is no alcohol in the sauce! I didn't realise it was the letrozole causing my tiredness and panic attacks and my migraine are out of control upto 12 a month!!!. Also I get sun stroke very easy. They told me last year I could come of the tablet as I had taken it for 5 years but I thought I would carry on, but I'm so ill with panic attacks, fatigue, migraines and aches. I thought I was going mad. So glad I  saw all these posts. I'm going to stop it now. I didn't realise letrozole was causing so many problems so glad I saw all your posts I feel more positive xx

Hi jmbl.

So sorry to hear about the side-effects you're suffering from the Letrozole.

After my last post I began to realise that I was becoming more and more depressed to the point where I felt absolutely nothing emotionally. I didn't even want to go to my grandsons's 7th birthday party, which was unthinkable for me.

I spoke to a breast care nurse, who told me to stop the Letorzole for 3 weeks and see if it made any difference. Within 10 days I was feeling so much more like my old self and the other symptoms were fading away too.

I saw my breast surgeon yesterday and am now on Tamoxifen, which I tollerated well the last time I had breast cancer 23 years ago. I will take it for 10 years (less the few months on Letrozole).

He was very emphatic that I should not have to suffer serious side-effects and that quality of life is extremely important for BC survivors.

There are other medications available for people like us who struggle on Letrozole.

It might be worth having a discussion with somebody in your medical support team to see if they can offer you an alternative that makes life more bearable for you.

I do hope you get something sorted out and don't have to continue living as you are.

Let me know how you get on. xx

Hi Grandmatina

Thanks for replying I didn't realise I had side effects till I realised something was wrong! Thank goodness I found this chat conversation I thought I was going mad. I was told I can come off Letrozole as I had been of it for five years last year but said I would continue not realising the way I was feeling was because of Letrozole. So I have stopped fingers crossed that like you I will feel a lot better in a few weeks. Like you I didn't want to see my grandchildren, I felt just to tired. I will keep you posted.

Good luck yourself and thank you xx

Hello again.

It's so good to share this roller coaster journey with someone who understands what we're going through!

Hope you feel better really soon.

xx

Hi [@grandmatina]‍ 

I am so pleased i found this chat line and read your side effects and everyone elses.  Its made me realise theres not only me suffering, and very badly at times with bad pains in my arms, deep inside and a feeling of burning in my bones etc. I have been on Letrozole from March 2020 and gradually the pains have got worse. I used to be very fit and strong especially for my age, but now can't lift my arms in different positions, hurts to brush my hair, used to be able to get my arms up my back to my neck but now can't do any of that at all.  Please can anyone help if theres an alternate to Letrozole. with no horrible side effects.

I hope you soon feel better GrandMatina

I am sorry i forgot the date - 17th July 2021 post from HeaRich replying to GrandMatina

I am sorry i forgot the date - 17th July 2021 post from HeaRich replying to GrandMatina