letrozole

FormerMember
FormerMember
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Hi been dreading taking these meds after all the negative feedback, wonder if anyone out there have not had the extreme side effects?

  • I had problems with joint pains and hot flushes so changed to Exemestane. This was even worse due to diarrhoea and stomach problems so went back to Letrozole. Gradually getting better after 6 months but now have lymphodoema. Stick with the Letrozole because you get different side  effects whatever you take. Some days I feel 180 and I am 73 but am managing. Keep your chin up!

  • FormerMember
    FormerMember

    Hi Bluestar welcome to the forum and I am sorry to say that I don't know anyone to date that has had no side effects some more troublesome than others.

    As far as I can gather bone pain seems to be the main issue with Letrozole though there is lots that has been written about the different brands of this drug and how that makes some improvement for folks so worth considering as well.

    Hope you get some positive feedback but remember everyone will have different symptoms and you may be one of the lucky ones who has few side effects. Best Wishes .x 

  • Hi

    I’ve just switched at the weekend from Tamoxifen to Letrozole and have been dreading taking it too. I don’t know how quickly the side effects kick in but so far so good! I didn’t really get any side effects from Tamoxifen and am keeping my fingers crossed this is similar

  • Hi 

    I can remember when I was told about taking the ER reducing tablets that I was debating about taking them at all because of seeing such horrendous side effects on here and everything I read on the internet. 

    I'm on Anastrozole rather than Letrozole, but they do the same thing. 

    I even had a meeting pulled forward by my radio team as I mentioned to them that I was concerned about the tablets, their side effects and especially osteoporosis.   His response wasn't helpful. "Well I can't make you take them" and that was it.

    However, eventually after looking at them for 3 weeks, I decided that ok, there was nothing to be lost by trying them and seeing how it goes.  

    I have been taking my tablets for over 3.5 years now without ANY side effects.  I had a DEXA scan for bone density at the start and had my 3 year follow up scan - no change - (Vitamin D and Calcium tablets prescribed at the same time - I did ask the oncologist for these when he prescribed my anastrozole). 

    I was prescribed the Accord brand and one time my pharmacist didn't have it in.  Within one day, I had horrendous joint pain on the new type - luckily, I used to order mine a few days early each month and had enough Accord, so I went back to them and - perfect.  I tested that other brand again later - just to make sure it wasn't in my head - same thing happened.  There are different things in the coatings which can make a huge difference, so that's worth trying if you find you start with side effects.  Go to a different pharamacy/ request a different brand.  

    I couldn't get Accord for about 6 months - they had stopped supplying for quite a while, so I tested Teva and was fine on them too - so I now know 2 brands are safe for me Slight smile

    If you Google each separate brand, it will bring up the contents leaflet of each one and you can compare the coatings and contents.  Minute changes can make a huge difference, so don't be afraid to test out brands.  There are an awful lot that the NHS will provide - some are expensive to the NHS, so you probably won't get a chance of being offered them  here's a link to the costings and brands and you will see why some won't be prescribed due to their cost. 

    The one thing that I've always done (during radio too - and no side effects there) was drink lots.  I have my tablet first thing in the morning with a pint of squash.  I've always been of the mindset that fluids help flush out 'rubbish' in your body and keep you functioning better, so I've always drunk a lot - but since having cancer, changed a few coffees to green tea. 

    I hope this helps and don't be afraid to test them out - I very nearly didn't even try them due to seeing so many negative experiences and it was a shock that I was fine!

    Take care, Lesley x 

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  • FormerMember
    FormerMember in reply to lesleyhelen

    Hi there. 

    I'm new to these tablets.  I'm taking anastrozole with no side effects so far  2 months in  following lumpectomy and RT  in dec. I do take lots of supplements to balance and support my whole immune system. Drink plenty clear fluids and keep moving. Stretching and yoga works well for me. Researching alternatives as my gut tells me we need oestrogen reduced not blocked.  .....

  • FormerMember
    FormerMember in reply to FormerMember

    Thank you for reply, I agree, reducing not blocking would be better.

    Was wondering how long it takes before side effects occur , does anyone know this?

  • My five year stint on these is up in September.  When I first started the joint pains and weakness became so bad I needed a stick to help me out of chairs.  Through trying out different brands and after tearful arguments in Boots I settled on a brand that seemed to give me less problems.  I was then pretty good but now, less than a year from the end I am suffering crippling knee and hip pains.  My legs also occasionally give out underneath me.  I have regained my limp.  Also am diagnosed with osteoporosis from my last bone density scan due to this treatment.  Not so bad that I need do anything about it though. Will stick it out but boy it’s going out with a bang.  Reckon they’ve changed the coating on the tablets.

    Sarah x

  • Forgot to mention my recent smear test had to be abandoned due to pain. They thought possibly due to lack of oestrogen.  After checking with my nurse I was given oestrogen pessaries to take for a fortnight before a second attempt.  Success!  The stuff it does to you.

    Sarah x