Letrozole withdrawal

Hi Dandelion54 welcome to the forum and wow 10 years that's a fantastic milestone to be reaching. 

As far as I'm aware there are no known side effects from coming off Letrozole but plenty from being on this drug. However, maybe one of the other folks on here will pop along soon to see if any of them have experienced whats happening  for you right now.

Hi Granny59

Yes 10 years is a long time to struggle with Letrozole and it’s horrendous side effects. I can tell you it’s not been easy but I felt I wanted to give myself the best chance so I persevered. The side effects become a way of life and you forget what it’s like to live life without the joint pain etc

Thanks for taking the time to reply.

Yes dandelion54, I stopped on April 26 after 11 years. No withdrawals, but a bit disappointed that the side effects are slow to resolve. I have been told it can take 2/12.  My energy is certainly better, but muscle tendon and joint pains are still there, together with dry mouth and eyes, and brain fog, but my BP seems to be settling. I guess they are a bit better, but I’m impatient! I was going to stay on it indefinitely, but one day decided I had had enough and stopped it . Good luck xx

Hi Seaspirit44

Thanks for your reply. I stopped the Letrozole on April 27th after 10 years and 1 month. My GP won’t prescribe it anymore so I have no choice but to stop however my hair has started to thin and I think that was the final straw. I’m not sure whether my headaches are hormone related, hay fever related, b/p related or something else.I do get out walking most days but with the rain it’s been difficult lately.  I must admit if I hadn’t got the headache I think some of the brain fog might be clearing. If they’ve told you a couple of months I’ll wait and see how it goes over the next few weeks. Thanks for the info and good luck on your onward journey x

Let me know how you get on dandelion54 xx

Hi there,

I’ve just started Letrozole after 30 weeks of chemo . I’d be very interested to hear if Letrozole contained your disease or improved it . I just don’t know what to expect at my next scan . I’ve been told very little by the medical team .

Thank you and every good wish for the future .

Hi God Is good 

Thanks for your reply. I can only comment on my journey which was that I was diagnosed with breast cancer which was found to be hormone dependent ten and half years ago. I had a lumpectomy followed by radiotherapy which was then followed by five years of letrozole this was then extended to ten years as the advice changed during my treatment. 
I have recently stopped the Letrozole which is slightly worrying but so far I have had no recurrence. I wish you well on your journey and hope you get on ok with Letrozole. It seems to affect people in different ways so it’s difficult to say how it will affect you. If there is anything that you want to ask me please feel free. I hope this helps x

I am on letrozole but i have just had bloods for my liver enzyme and it is raised and has been since i took this tablet, so i have a fatty liver now so i am upset about that now. i know it’s rare but it can cause problems with the liver, i want to come off this tablet now 

Hi arty68

Sorry to hear about your problems with Letrozole. How long have you been on Letrozole? Have you spoken to your Oncologist? It’s a horrible situation to be in I know. I did manage 10 years of taking Letrozole but everyone’s different and you have to do what’s right for you. Try to get as much advice, help abd support as you can.