Good morning everyone
I have the option of taking Letrozole for five years. I’ve read the booklet and seen some posts about its adverse effects.
Is anyone taking it without these awful side effects please.
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Hi @nutmeg1 I’ve been taking Letrozole for 2.5 years so am halfway through the 5 years. I had some vaginal dryness at the beginning but it wore off and some brain fog but nothing that was impacting my life for long periods. I have had no joint pain or mobility problems and have had my second DEXA scan in January with no sign of osteopenia or osteoporosis. I have also had two “holidays” one of six weeks and one of ten weeks during that time to test for impact on cholesterol. I had just turned 67 when I started taking it so may be quite a bit older than you however, despite the fact that many women undeniably have very bad side effects, many don’t. You won’t know until you’ve tried them for say six months. If the SE are unbearable then you can always discuss with your team the opportunity to try something else (Exemestane or Tamoxifen) with the option to give up endocrine treatment entirely as long as you are aware of the risks. Remember you are more likely to see a lot of posts from women who don’t tolerate Letrozole than those that do, as those that do tend not to be on a forum looking for support. I would never try to persuade anyone to take it or not to take it but logic would suggest giving it a reasonable try to see. Good luck with whatever you decide.
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I’ve been taking it for two and a half years with no problems. Good luck.
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Thank you so much for your reply.
I am 78 years young and heartened by your post.
I am having this conversation with oncology on Monday and value all opinions.
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Thank you 
I’m taking it - 10 months now and no real side effects. Had a bit of joint pain at the start but found moving actually helped, and some vaginal dryness but I use hyalofemme (prescription) which helps.
I am supposed to be on it five years followed by five years tamoxifen but I’ve asked my consultant to stay on it throughout and he’s not averse to that, depending on DEXA scans etc.
I sometimes feel letrozole gets a bit of a bad press, I know I was really dreading it having read about the side effects, but I’m so glad I went ahead, and I think unless you give it a go, you won’t know how your body reacts to it xx
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Thank you for your reply. It helps to get a balanced view of everyones experiences
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Hi. I’ve been on letrozole for 2.5 years now. I didn’t feel great for the first 2 months but now I’m fine apart from some joint pain, but it doesn’t affect my life in any way. You hear a lot of negative things about letrozole but I think lots of people have a positive experience with it.
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Thank you for your reply
Hi @nutmeg1
I’ve been on Letrozole for two years. I’ll be honest and say I’ve suffered terribly with muscle & tendon pain, to the extent that I could barely walk and lift arms. My endocrine nurse just kept telling me aches & pains are to be expected.
I eventually got GP appointment and thankfully saw a very understanding one who instantly diagnosed Polymyalgia Rheumatica. According to her and funnily enough the nurse as well! you can develop conditions like this triggered by your lack of oestrogen. I’m now on steroids (another tablet I know 
) and am 95% pain free. I was seriously considering giving up the Letrozole in favour of a decent quality of life.
What I’m saying I guess is take it and see. If you do get really unpleasant side effects then badger your GP for blood tests etc. Mine couldn’t believe I’d had none since starting Letrozole.
Stay strong x
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Thank you for your reply x
Hello Nutmeg, I’m into my 4th year on Letrozole and it was difficult to begin with but you’ve had some very sensible advice already so all I’ll add is that some brands can cause more issues than others. So if you find yourself struggling consider asking to try a different brand of the drug and that may help.
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Many thanks for your reply
Hi
I completed 7 years of Letrozole back in June. I coped reasonably well with the side effects, mainly muscle and bone aches - they just became part and parcel of my everyday life and I kept telling myself that they were better than the alternative, I never really considered not taking it.
I did find that different brands affected me differently….this became a bit of a battle with the Pharmacist who insisted that they were all the same. Not true - something to do with the fillers apparently.
Now I’ve stopped taking them, I realise just how many aches I did have as I am now virtually ache free! I do suffer with restless legs though.
I am now 67, was diagnosed back in September 2016, and am all clear.
If you can persevere. To me the long term benefits outweighed the side effects.
Sending hugs to everyone in Treatment. There is light at the end of the tunnel.
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Thank you for your reply. Everyone is so helpful in sharing their experiences
I change brands to Femara by Novartis as had bad joint pains on Accord
Now great !
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@nutmeg1 I have been taking Letrozole for 4 years and although the side effects were worse at the start they did seem to wear off after six months or put another way I was able to tolerate it.
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Another good post. Thank you
Many thanks. Helpful info x
Hello Nutmeg,
I have been on Letrozole for eighteen months now, was going to be for five years, it is now indefinite, possible forever unless something else is invented. I read so much stuff about it. Some people suffered on Accord but not Sun Pharma etc. I even spoke to the Pharma company that makes Femara and was considering paying the huge amount of money that it costs. I then wrote down all the ingredients (wrong word I know) for the Letrazole I had been given (no choice from Pharmacy) which was Cipla, Sun Pharma and Accord, there seemed very little difference, but what do I know, one small ingredient could give problems I suppose, I think I overthought things. I have a wonky hip so have had pain there for ages, but could put it down to Letrozole as I read it causes joint pain. Sometimes ignorance is bliss, so I am throwing away all the stuff I wrote down and so far I don’t have any problems other than what is in my mind.
Minnie
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