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 Judy,

Make sure to have a chat with your oncologist or breast care nurse first, before you stop taking the Letrozole.

I hope that your joints settle down, along with all of the other side effects.

Please let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx

I’ve got an appointment with my oncologist tomorrow. But I’ve stopped taking them 3 days ago and already I feel so much better. The aches have reduced tremendously, itching not as bad , last night I slept right through. My quality of day to day has improved so much in days.

Hi Judy

just seen this thread:

I am into my second month of Letrozole with the main SE being insomnia and joint pain. Please let us know what your oncologist says. It is hard work at the moment! Trying to stay positive. I have spoken to my GP who is wonderful and have got meds to help me sleep but I don't want to take yet another tablet! I previously only took omega 3 fish oils! 

Good luck tomorrow.

C x

Hi

I have now been on Palbociclib and Letrozole since March 2018 after developing bone mets in my pelvis a year after being diagnosed with breast cancer. I have discovered that the brand name on Letrozole makes a huge difference to how I feel so it might be worth trying different brands until you find one that suits. For me I seem to be fine on Accord but some of the others have been horrendous. You could ask the nurses which one seems to give the least side affects x