Hi all
So many of us talk about life altering side effects from Letrozole etc on here but are you telling the right people?
I finally got around to using the Yellow Card site this week to report the effects it had on me. https://yellowcard.mhra.gov.uk/
My feeling is we need to be documenting it so that support is put in place for those struggling and people aren’t automatically prescribed them when there is little benefit to be had.
When new (more expensive) drugs arrive they may be sidelined if the existing cheaper regime is thought to be well tolerated.
So if like me you are being disabled by these drugs or having huge changes to your mental health please take the time to report it.
I stopped taking them as only a 1% benefit for me but still have lingering neuropathy & joint issues. Much better but not gone.
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I couldn’t agree more. I always report any side effects to any drugs via the Yellow Card scheme and that included a very long list for Letrozole in 2024 which I stopped after 1 1 months. It doesn’t matter if they are already listed on the drug leaflet or not as all reports can impact the frequency data.
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Hi, my oncologist changed my Letrozole to Exemastane. The itching stopped but joint pain is still horrible. Now I’m a month in taking anastrozole. At the moment I’m still in the same position but I’m seeing the oncologist in December and then he said if I still am suffering the last thing I can try is tamoxifen. Ask your oncologist to try another one. Everyone reacts differently.
I talked through the other AIs with the oncologist and they couldn’t promise that they would be better. They offer tamoxifen but mentioned the risk of blood clots. My mum suffered from non dissolving blood clots the risk was deemed too high. But I have a high survival Predict score with just surgery and radiotherapy, AIs add just 1% to my chances.
Was you given the prediction score by your oncologist in the uk?