I had breast cancer removed Aug 2013.  Started on Letrozole April 2014 for a year but because of aches & pains I got moved onto Anastrozole.  At first I thought it was better, but been on it now for over 2 years & I'm crippled with joint pain, shoulders, hips, knees, particularly left leg, foot deformed, bakers cyst behind left knee.  I'd asked consultant if I could stop it.  He said no & offered Tamoxifen, I said no.  2 weeks ago I went to GP who offered me a break for a month to see if there was improvement.  So I've stopped taking it.  I value quality of life.  My bakers cyst has reduced & hot flushes have stopped!  I've been cold.  Haven't been cold in over 3 years. In 2 years by bone density has gone from above average to osteopenia of the spine.  I know someone who has been on it for 6 years without any side effects.  It must affect people who are prone to arthritis.  My cancer was the most oestrogen positive you could get, but a risk I'm prepared to take rather than suffering.  Also had the insomnia & itching, take antihystamines to control it & constipation.  But prone to the latter two anyway.

Always remember it is your choice to make. Do some research to back you up, there’s lots on here so that you know more about it the next time you see the doctor. Think carefully about what you want, and the possible risks. Everyone is different. For me the side effects are just too much to bear currently, I’m seeing a shoulder specialist tomorrow because of problems there, and I’ve done my part with physiotherapy , over 6 months, injections and exercise and still I can’t fasten my bra, or sleep at night from the pain.  I need to feel some kind of “normal” for a while. Maybe this will only be a break and I will be given something else later, but it will be my choice.

Best wishes and good luck.

Hi,Ali,

it’s now 10 months since I stopped Letrozole and the joint pains in my legs and muscle pains have all but disappeared. I tried Tamoxifen for a short while but that was the same so stopped. It does take a long time for the side effects to disappear. 

Re your shoulders, get some physio if you can before it stiffens. I had that too and was told it’s common after radiotherapy, unfortunately mine developed and I had to have a shoulder replacement due to arthritis. Sometimes you think these pains are never going to end but one day you realise how much better you are and you haven’t noticed, I hope this helps. 

Hi Ali,

I have had 2 bouts of breast cancer. The first time I had a lumpectomy followed by Tamoxifen for 1 year. For the second bout, I had a double mastectomy, followed by Letrozole for 6 years. I did not have any radiotherapy or chemotherapy.

I had side-effects with both Tamoxifen and Letrozole. I stopped taking the Letrozole in July 2017, but am still having pain in both arms, legs and back.

Kind regards,

Jolamine xx

Hi can I ask what the herceptin injection is that u have as I have zoladex once a month as I couldn't have had the letrozole as I was prw menopausal not post. I feel ur pain wen u say ur shoulders hurt as mine do to I feel like somebody heavy is permebtly satin them and it's all down my arms as well.my bones click I struggle to bend over most days and my knees especially right knee is getting so bad if it's bent for just a minot then it hurts to straighten and stand on and my left knee feels it's going same way. My hips hurt my back my bum gets cramp if I walk too much sometimes as well. My daughter tried rubbing my shoulders for me and she's no masseuse but she said I am all knotty and need sorting. I have been given codeine and naproxen from doctor and not even taken together dotvey work not even with paracetamol and ibuprofen either. I had thought of mayb buying one of those criss trainer machines but worry cuz of my knees or fact I have oestwopenia does anyone know if it wud help me 

Hi Shazbo, I took Herceptin because my cancer was her2 positive. It was my 2nd bout of breast cancer as a year after my first diagnosis they found it on my follow up mammogram!

I stopped taking Letrozole 7 months after starting it as I felt dreadful! I discussed everything with my Oncologist first though.  It was having such a detrimental effect on my quality of life that we both decided it was best for me not to take it.  

It is 2 years since my mastectomy this month and I still get pain in my breast and under my arm.  I do check in with my breast nurse whenever the worry takes over!  But after radio, chemo, herceptin and 3 ups I think its one of those things!

I take vitamin D, loratadine and turmeric with black pepper tablets each day.  The loratadine has been proven to help with bone pain after chemo and turmeric for the joints.

When my shoulders seized up the physio definitely turned things round for me so definitely push for that.  Ibuprofen also helped .

I am still a creaking gate at almost 53 but I am back teaching full time and have been since Sept 2018.  I pray every day and thank God everyday that I am where I am.

Keep going Shazby but get the help that you need.

Lots of love xx

Oh Shazbo, I'm so sorry you're going through all this at your age. I have found that 20 minutes a day on the exercise bike helps as it doesn't impact on your joints. I also do a range of physio exercises that take me about 15 minutes a day but they do help. I've started taking Omega 3 oils too along with turmeric and Accrete D3 to prevent my ostopenia developing into osteoporosis. A warm bath at night with some  epsom  salts in the water seems to help the pain a bit. I'm over 60 now but up to getting cancer was running miles and totally pain free. But I think it is almost manageable provided it doesn't get worse. Try the exercises and warm baths, I hope it helps. Best wishes

I tried a hot bath Friday night and I struggled to get out of it. I am on adcal for my oesteopenia and I pray it don't turn into oesteoporosis I a sleep at night I can't get comfortable everything is a uphill struggle iv been on my own many years now and very independant but this is frustrating as I hate needing help 

Hi, I don't know if this info will help as  I've only been taking Letrozole for 3 months so I'm not sure whether it's long enough for the pain to start kicking in on not, but I started taking Tumeric capsules the same time as the Letrozole and although I have a few dull aches it's nothing that I can't cope with, I do get the hot flushes though. I only mention this because before taking letrozole I suffered for years from crippling arthritic pain in my lower back, that pain has disappeared since taking the Tumeric & left me wondering whether it really has eased the side effects of the letrozole.   

Hi Ali49,

I realize that this is three years since you posted, but am replying in case you are still on it or for someone else coming to this thread now like me. I was diagnosed mid 2020, lumpectomy Sept, radiotherapy Nov, started the letrozole Nov too. By mid Feb I had so many side effects, painful joints all over, hands went horrendous, and both shoulder rotator cuffs were so painful, I had to get my husband to help me get undressed. Finally I was given a 6 week "letrozole holiday" in May. After 2 weeks I was in pieces, sobbing, because there was no improvement. But aound week 4, I realised my shoulders did not hurt anymore and various other pains had eased a lot even if not gone. The flushes/sweats dimished etc etc. I had an extra 5 days on top of the two weeks for a wedding (did not want to suddenly be a sweaty mess) and for the last two weeks of my break I felt a lot more human (almost normal!). I am back on it now and waiting to see what comes back.... But for anyone starting a break, don't despair in the first week or two.

Hi Ali49,

I realize that this is three years since you posted, but am replying in case you are still on it or for someone else coming to this thread now like me. I was diagnosed mid 2020, lumpectomy Sept, radiotherapy Nov, started the letrozole Nov too. By mid Feb I had so many side effects, painful joints all over, hands went horrendous, and both shoulder rotator cuffs were so painful, I had to get my husband to help me get undressed. Finally I was given a 6 week "letrozole holiday" in May. After 2 weeks I was in pieces, sobbing, because there was no improvement. But aound week 4, I realised my shoulders did not hurt anymore and various other pains had eased a lot even if not gone. The flushes/sweats dimished etc etc. I had an extra 5 days on top of the two weeks for a wedding (did not want to suddenly be a sweaty mess) and for the last two weeks of my break I felt a lot more human (almost normal!). I am back on it now and waiting to see what comes back.... But for anyone starting a break, don't despair in the first week or two.

Hiya Sailinglass....

Just read your post.... I've been on a similar journey...too scared to take a Letrozole break though....pleased to know however that the immense shoulder pain is just down to that pesky tablet....

I had lumpectomy in March 20 and radiotherapy in sept... started Letrozole in September..

Pain in left joints only.... for ages plus eyesight probs that started Feb 21.

Hope you are well going forwards.x

Hi MilosMum,

I notice that your surgery is scheduled for tomorrow and hope that it all goes well for you.

Kind regards,

Jolamine xx

Helloooo !

Thanks for your message...My surgery was the 8th June....so i'm already back at work...I had a salpingo-oophorectomy ! .....Went back to work on 27th June cos really fine...like carrying hoover upstairs and sorting litter trays (which was my biggest worry)...Anyway all fine.  Had eye hospital appointment today...just out of dark glasses after having eyes dilated...Dr said my eyes are not just healthy but very healthy!...which leaves me with some element of dissapointment as I know there is a physical pulling of my right eye.

I have reports and the actual images from my MRI...the doctor there says my eyeball is visually fine on the MRI scan..I can scan back and forth through it but it means nothing to me in terms of what is abnormal...so I have to believe them. 

Hope you are doing well and keeping safe...x

Hi MilosMum,

I am sorry for my mistake, but am glad to hear that your surgery is over and done with and, that you are recovering so well.

I am glad to hear that you got a clean bill of health from the Eye Hospital today, although I can appreciate that you're still not happy, when you are aware of the pull in your right eye. Don't be afraid to get this seen to again if this pull doesn't settle down after a month or so. Could this be a squint rather than a visual problem?

Kind regards,

Jolamine xx

Hello Jolamine...

Thank you for your reply, please don't be sorry, nice of you to ask...

The eye thing is like a physical feeling of something being caught on something... really weird....I feel like if I could put scissors under my eyeball and snip it would go.... it's like when I look up the lower part of my eye is attached to something it shouldn't be... that's the best I can do for explaining...

The Dr today said he could only tell me if my eyes are good or bad... not necessarily what is causing another problem. He said I do not need to see an optician for two years.... there is nothing wrong ... this is just frustrating....but because of the MRI scan I do kind of feel better. 

Don't know where to turn with it so just gonna leave it for now. Maybe I've reached a point where this is as good as it gets... weird vision, painful left hip and left knee... general joint arthralgia... still too scared to stop the Letrozole....so I think I'll just shut up moaning and plod on.....from the things I've read I really could be in a worse situation with my prognosis.

How are you??

X

Hi MilosMum,

I am a lot better now that I am no longer taking Letrozole, although I still suffer with some of the side-effects. Still, I'm glad that I perservered with it, because I feel that I have done all that I can to keep the cancer at bay.

Like you, I feel that I could be a lot worse off and, I'm grateful to still be here 12years after my first diagnosis.

Kind regards,

Jolamine xx

Hello,

I have been on Letrozole for two years and have the same joint pains and aches as so many people report.  I am thinking of taking a Letrozole,holiday around my son's wedding.  I'd be interested to hear from anyone who has taken a holiday and to know how long for and how long before symptoms improved...if they did. 
 

Shermalt

Hi, 

I posted in April 2017 about this , it may help you. Briefly at the end of my tether I just stopped and within a a week I felt so much better. A locum consultant just left it at that, but 5 months later a new consultant put me on Aromasin, also called Exemestane and the side effects are nothing like as bad. I still take it so that says something. I think it was quite new then. 

you don't have to suffer in silence, ask for a change and push for it. We are all different and affected in different ways so a different medication may well suit you better. I have had 4 different meds and letrozole was by far the worst, I am hoping to stop altogether next year. 
good luck, enjoy the wedding.

Hi Shermalt,

A very warm welcome to our forum.

I am sorry to hear about the trouble you've had with Letrozole. I took Tamoxifen for 1 year, then Letrozole for 6½ years. I had a number of side-effects. I stopped taking these in July 2017, but my joint pains have never subsided since.

Have you discussed taking a break with your consultant or nurse? It is always worth doing this first. The other thing you could do is to follow Snowdrops' advice and change to aother drug with fewer side-effects. I hope that you still have time to get this sorted before your son's wedding and that you all have a wonderful day.

Please keep in touch and let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx

Hello Snowdrops and Jolamine,

Thank you both for your replies.  It really does help to share experiences.  I have been in touch with my oncologist and will see what he says.  I have slight osteoporosis now and am really keen to keep that in check so want to do something about Letrozole.  I take a lot of exercise and do specific ones set by the a physio friend every day but I don't think it is making much difference, to be honest.  I wake up very stiff in the mornings and have to work hard to get everything moving! 

Shermalt