Hi Dancey, i came across your post because I just stopped taking letrozole. was on it for 10 years!!!  breast and liver cancer in 2010. chemo and radio. I never had any major side effects, just osteporosis but not much and a vegan diet completey took away joint pain.  But now I want to know what to expect of the withdrawl. I see you posted here one year ago. How are you doing? 

Hi to both you ladies:). I've been on Letrozole since 2018 and honestly cannot imagine being on it for another 3-8 years. I, too have awful joint side effects, constantly tired, no energy, irritable...but I just smile and pretend it's all OK. I actually thought that once you stop taking Letrozole-your SE reduce. I wasn't aware of any withdrawal symptoms, which is what propelled me to reply to your posts. I'd be interested to know whether either of you experienced any withdrawal effects? 

Best wishes,

Marla   

Oh, that's great news! Well done for doing your time, though I understand it may only be a temporary break:). Eight years is a long time! I just wanted to check that you're doing this with the support of your doctor (oncologist) because it's so important to make these decisions "informed"-it sounds like you are *very* informed and I am so happy for you! I am counting my days/years down:). It would be interesting to hear how you feel *off* Letrozole, and how quickly after stopping your meds, your side effects improve-would you mind updating us here?  xxxx 

Hi thanks for your reply I will keep you posted xx 

Hi there

Coming off letrozole

6th May 2021

In response to Wileycoyote

I have been on letrozole for 14 months now and I have really struggled with the side effects- which are exactly as you describe. I went for blood tests today and the nurse took my blood pressure which was sky high. I see the breast nurse next Tuesday (11th) so will ask her if I can come off the letrozole for a while. I have never had BP problems until I started taking letrozole. Thank you for the tip about Vitamin B complex - I will try it and see if it helps. 

Hi 

Can I ask you what Vitamin Complex B you take, I am having awful pains in my legs and joints and also live in a hilly place which I am struggling to deal with and need something to try and ease the pain.

This is the only symptom I have had my BP has been fine but this is becoming unbearable!!

Thank You 

Hi,

The Vit B Complex doesn't appear to be working for me now. I'm also in awful pain with my legs and joints, now got a swollen right leg and my knee joint is so painful. I'm now considering cod liver oil... trial and error mostly!  Keep reading up on joint pain remedies, hopefully something will make it easier. xx

Thank you for your response, my knee joints are the worst I am constantly taking pain killers I'll give anything a go, I hope you manage to find something that works

Hi, I came off Letrozole yesterday YIPPEE!!! I did 7.5 years and oncologist agreed I could come off it as the side effects for me were so bad. As you've been off it for a while, I'm interested to know if the side effects for you disappeared and if so how long it took for them to lessen. (I'm so impatient to start feeling well again!!) hope you are OK x

Hi first of all my husband asked if your name was Justine too as I'm very impatient

Anyway after comming off letrozole I have been loads better, my hot flushes are about 95% gone and the 5% I have are nothing compared to how they were.

my weight is coming off slowly but could come off abit faster if I 100% stuck to my diet.

im really pleased that you are now free of that little pill that caused so many problems, I hope you see a vast difference like I have,

please let me know how you get on.

justine xxx

Hi Justine, thanks soo much for replying and so quickly! We don't share the same name but our hubbies must be alike as mine said just be patient and see what happens. As if!!   Good to hear your sweats have reduced, you must be so relieved. Did you get the joint pain too? I get joint pain, my arms and legs ache, intolerably at times and I am so tired all the time. Got any good news on these? Xxx

My joint pain has only changed a little so far I've just had a new knee so hopefully it will get better 

and im still tired but I find im more tired when my b12 is die every 3 months 

this may be worth you having blood test to see what you lack.

my husband has just said he thinks im doing more so I must be

My life has definitely change for the better since coming off letrozole and I hope it will still improve as I go along 

keep me updated 

I will keep fingers crossed xxxx

My joint pain has only changed a little so far I've just had a new knee so hopefully it will get better 

and im still tired but I find im more tired when my b12 is die every 3 months 

this may be worth you having blood test to see what you lack.

my husband has just said he thinks im doing more so I must be

My life has definitely change for the better since coming off letrozole and I hope it will still improve as I go along 

keep me updated 

I will keep fingers crossed xxxx