Anyone on letrozole

[Santa01]

Hi just wondering if anyone here is on letrozole for BC. I have been on it about 6 months now and the first three were fine, no SE, but the last three, my joints have taken a beating, specially hips, have mentioned this to my oncologist and he sent me for a dexa scan, still waiting to hear results, any else having similar SE? I'm mid 40s if that makes a difference....

Should add, Also have anxiety, hot flashes, sweating in bed, and I'm pretty sure I'm depressed....

@Santa01 how are you doing now? I am
On my first round of letrozole now after clomid didn’t work for me

Hi HT1335, are you on it for BC? Still have pains and aches and all se mentioned above 😔

@Santa01 sorry what is BC? I am on it for pcos to help me ovulate, I’m also on metformin.
Oh that’s a shame that you’re getting pains and not feeling good I hope they can do something to help

Hi yes been on letrozole for BC for almost 5 years. Have found some brands better in terms of SE than others - I prefer Accord brand. Have you tried switching brands?

I've been on a few brands, I just take whatever the chemist give me, I probably should take more note of what effect each brand has, what were your SE?

SE not too bad really, aching hand joints and some rib pain but manageable. Got very painful shoulder but not sure that’s related or wear and tear as only came on this year, think it maybe due to not keeping up with yoga in lockdown Have had anxiety too although I think that’s a pretty normal response to diagnosis and having life generally derailed! Do you have a BC or Macmillan nurse, I’ve found they’re full of expertise and quite supportive?

@Santa01 sorry I think I have came into the wrong type of thread as letrozole has been given to me for infertility
I see what you mean now and I really hope that you get a positive outcome
Good luck with your treatment both

I was on Letrozole for 2 and a half years with minimal side effects, but then had a Dexa scan which showed I had developed osteoporosis. My oncologist changed me to Tamoxifen a year ago and I’ve been fine.

OP If you're pre-menapause then ask if you can try Tamixafin instead as it's supposed to have less SE.
I've been on letrazol for BC for 4 years now. The first 2 years were hell! Sorry, I know that's not what you want to hear and I really hope it's not the same for you.
Whatever you do, avoid Anastrazol like the plague. It totally affected my life, to the point where I was suicidal. For me, Letrazol is the lesser of two evils so I put up with it. The joint/body pains are nowhere near as bad now, or maybe I've just got used to it?
Tell your oncologist and ask to try something else. Where I live there is only 1 brand of Letrazol available (Femara) but it sounds like you have a choice. Trial and error may help you figure out which brand has less SE for you.

Hi @GileadTurnsYouIntoABitOfACunt. So sorry that you had 2 years of he'll from letrozole, I am post menopausal, thanks to chemo.. my side effects so far on letrozole are what I mentioned above, they are bearable just about, and I'm reluctant to go on tamifoxen, the aches and pains are the worst I guess as I don't know of they are the drugs or something else, it's a total mind fuck.... Excuse my language

So I had a long chat with my Onc, he mentioned if the aches and pains get any worse he would do further investigations, and that they were probably down the my meds, so now I'm sitting here analysing every ache and pain and wondering if it's better or worse or the same, head wrecked.. not sure why I'm posting this, just need to get it out of my head I guess.... One thing he did say was I should be feeling more positive as my oncotype was low so am low risk of recurrence.. why can't I just focus on that....

@Santa01 mets pain is completely different to just random aches and pains from letrozole, though. Its a deep ache in specific locations (spine, rib, hip, sternum, pelvis) that pain killers only barely touch, and it is usually worse at night. Letrozole pains, on the other hand, tend to be a bit more "arthritis-y" I guess is the best way of putting it - creaky fingers or knees or shoulders, which aren't common mets locations.

Definitely take more note of what the pharmacist gives you - I've noticed I cant have any with the tartrazine colourant, so that limits me more or less to Accord. Last time they gave me a different brand it turned me into a raging bitch because of the all over body aches and pains and I refuse to add on-going paracetemol use on top of everything else when I can just demand the brand that doesn't give those side effects. I didnt even finish that box, I went and got an early refill and requested Accord and stood there while they filled the script.

I was on Letrazole for BC. Initially Tamoxifen then Letrazole for about 12 months. But the joint pain was absolutely awful. I was late 40's but hobbling round like an old woman. I had to take pain killers before my Pilates class otherwise I couldn't get through it.

Been on Tamoxifen for the past 5 years (another 3 to go) but now have a uterine polyp which needs removing and endometrial endometriosis which turns out to be a side effect of the Tamoxifen.

Hi both, thanks for taking the time to reply to me. I really appreciate it. I will def take note of the brands and change if one isn't suitable for me. xx