Letrozole

Hi 

I'm on Anastrozole which works the same way as Letrozole and am 5 weeks into a 6 week break after being on it for 9 months. The joint pain I was getting was high and I had particular problems with tendionitis in both ankles which was really impacting on what I could do. I had previously been on HRT for 4 year prior to diagnosis so had the double whammy of stopping that and immediately further depleting my oestrogen..I'm 58

5 weeks off it the joint pain and stiffness is hugely better plus I am no longer waking with a fuzzy head and my mood is much better. The swelling I had in my feet has gone also. Ankles are still a little stiff but better 

I had a telephone review with the nurse prescriber this week (I'm on patient led follow up) and she will be writing to my GP about trying Arimidex ( branded version of anastrozole) or switching to Exemestane as it works differebt chemically that anastrozoleand Letrozole. She also said the benefit to me at 10years is 1% if I stay on an AI and so I need to balance up quality of life v 1% benefit. Interestingly she also said that, for me, main benefit is achieved in 3yrs and less over years 4 and 5

I can totally sympathise with your situation. I was fit, well and active prior to my diagnosis October 21. I'm grateful for my treatment but do feel more aftercare is needed for those of us on hormone therapy 

I hope you feel better soon and find a way forward xxx

Hi Carolyn321, I’m on Anastrozole like Jurassicgirl and yes I get a range of side effects. Fatigue, joint pain, brain fog and more! I can manage my life despite them but couldn’t cope with work. I was a special needs teacher, I did go back after radiotherapy but never managed full time. Finally got so stressed and anxious over it all that I was signed off sick. After a long and painful process I took ill health retirement. I consider myself very lucky that my school were really supportive, as were the occupational health team. But it was still horrible to find that I simply couldn’t do the job any more, not even part time. 
Now I am able to adapt my very different new life to accommodate the side effects. Luckily the joint pains seem better with exercise so I walk loads, including Nordic walking. I feel pretty rubbish in the mornings so I don’t rush anywhere unless I really have to. And I’ve accepted that the brain fog and memory issues mean I’m forgetful and inefficient! But I try not to let it stress me. I’d have found it all a lot harder to deal with if I’d been younger and had to expect more of myself. Now I accept that the new me is active physically (walking, weekly exercise class, just started going to a small local gym) but otherwise quite slothful! 
Jurassicgirl I totally agree re lack of after care while on hormone therapy. I feel like once we’re on them we’re just left to get on with it. No blood tests or monitoring, definitely no discussion re side effects. 
However for now I’ll carry on popping the pills! I’ll be at the 5 year point next December so I guess I’ll have a discussion re whether to carry on as I’ve read studies saying it’s beneficial for a further 2 years. We’ll see! Love and hugs, HFxx 

Hi HappyFeet1 yes I feel the same way about wanting to complete the 5 years if I can so trying to find a balance that is liveable with .  It may only be 1% but, as my nurse said, percentages mean different thingto different people. I work full time so that is an added factor but my work is very supportive. I guess what this break shows me is that my body does have the capacity to recover when I'm not on tang them so that is something to look forward to  ! I have a TC with my GP in a week or so time to move things on. She's pretty good to be fair. Just back from a swim which was lovely for stretching erything out

Thanks folks your advice has been very helpful. We definitely need more support when treatment finishes - I feel worse now than at other point.

Good luck for the future.

Carolyn x

Hi Carolyn, I have just started Letrozole (sun brand) a few days ago and already I can feel it in my joints and have some mild headaches.  Dreading any further side effects.  Early days for me.

Hi 

I have been taking Letrozole since mid May (Sun pharma brand) I had some stomach pain first few days and slight joint pain which seems ongoing. I can cope with this and am reluctant to change to a different brand. No night sweats, hot flushes etc so far so sticking with it for time being . I take it before I go to bed. Hope all gets better for you.or at the very least no worse x

Hi Janemb, Did you ask your GP to specify Sun for further prescriptions?  I picked this one up from the hospital pharmacy.  I think my local pharmacy generally supply accord.

Yes it states on my prescription the brand. I had to change pharmacy as one couldn't get it as a smaller group. My joint pain is there morning and evening better during the day. Never so bad i need pain killers so feel this is doable as long as it stays like it is x

How are you stopped taking letrozole on Saturday aches and pains a bit easier but still got fuzzy head.  How long does it take for letrozole to get out of your system.  I’m having a break and then going to try tamoxifen xxx