effects of letrozole medication

Dearest ,

I don't think I have noticed your name before on the forum, so would like to say 'Hello and Welcome to the Group none of us want to be in'.  The knowledge in here is amazing.

I have been on Letrozole 2 years in September.  I dreaded taking them at first and opted to take at night (thinking I would sleep through the side effects).  I went for a few months before I had the twinges, aches and pains. Then started taking combined tablet of glucosamine and chondroitin, a vitamin D supplement and a product called 'Golden Paste' made from coconut oil, turmeric and black pepper, I do find this helpful - you make this yourself.

There are a lot of treads with umpteen posts relating to Letrozole and side effects, if you type in the search bar 'letrozole' it should bring many threads up. 

A lot of the ladies find that different brands have different side effects some greatly increasing side effects others with less effects. The funny thing is a brand that suits one lady won't suit another.  I could say a lot recommend Accord brand as I believe this is very close, if not the same as the Femera brand (this was the original brand). 

I have had varying side effects, my worst was 'trigger thumb' - over a course of months I had it in both thumbs (couldn't bend thumb and if I did force or know it my thumb locked bent.  My doctor suggested an operation or 'don't bend my thumb' - she did not believe it was a side effect.... I do, I really do, it literally came on overnight in my right thumb.  Then months later is cleared up on its own, joints are still a little doggy, but manageable.

I am not medical in any way and would not suggest this you coming off your tablet.  I have read on hear a few ladies have reduced/halved the tablet in order to stay on it and lessen the side effects. This is something you would have to talk seriously with your doctor.

A few things I will say for you to consider.....
Are the side effects actually side effects from the tablet.... or is it the side effect caused by the tablet doing its job - reducing/taking the oestrogen out of your body? Meaning, is this your body's reaction to having less oestrogen?

This one is another for you to consider....
If you stopped taking the tablet and you had a reoccurrence how would you feel, could you cope knowing you may have prevented this by taking the letrozole?

Take one day at a time and, remember Letrozole really is your friend - even thought it might not feel it, it is your friend. If is taking the oestrogen out the stuff the BC feeds on.

I hope some of this makes sense and helps you even a little xx

Hi  and thank you so much for your input. I am new to this forum. I am also on Herceptin every 3 weeks for a year (until march 2020) following chemo and radiotherapy treatment.  I did get some joint pain with that but only on certain days within the cycle.  The deterioration has been significantly worse since the letrozole started.  I was very reluctant to go on this journey.  The question of not taking it and then having to face the  'if only'  further down the road, and then family pressure to even be not considering taking everything offered was overwhelming.

I do wonder if this is the tablet 'just doing its job' and as it works longer might get better to adapt.  I take it first thing in the morning, as recommended by a pharmacist, and as a normally busy person, it doesn't bother me much through the day.  However after tea time everything starts to seize up and is a huge effort sometimes to keep moving.  I suddenly feel like an old woman, with a doctors' message ringing in my ears that you have to expect aches and pains as you get older.  I am really 67,  but in my head maybe 45, but my body is starting to feel 90!!  I am not a sleeper either as you can probably tell, but at this point of time I can hardly move without a pain.  I have read some comments re changing the doze but would not do that without medical advice.  I have also been told a bone strengthener will need to be considered next, which could cause even more joint problems.  That's another thing I can't get my head round that this tiny pill is making me need yet another drug to try and reduce another major problem with osteoporosis that wasn't there before.  

Sorry if I sound ungrateful that all this medical intervention is being offered and I am moaning, but at the moment it is becoming more and more overwhelming to cope with.

Hi wendymum 

I don't know if you're still there.......I am awake too because my leg and feet ache tonight. Like you I am nearly 67 but feel less mobile than my 92 year old mother. 

Interestingly I'm not taking letrozole. My cancer was triple negative ......I can't take anything else to prevent the cancer reoccurring. Yet, either because my own body is low on oestrogen or because I take other pills for the neuropathy developed during chemo......I am always in pain now. 

I think you will get a lot of helpful advice from the many letrozole users on this site. I know I have read over the years about how changing brands improves things. I remember my cousin who developed bc the year before me, telling me she could hardly move then her hospital changed dose and brand......everything improved afterwards.

Do you have an oncology appointment soon? Otherwise I would chat to your GP. Your family are right in wanting you to do everything possible to prevent the cancer returning but they don't have to live with the side effects. I am doing what I can......no dairy products, no parabens, exercise if possible but I also know that should my cancer return, there will be some treatments I shall question now I am wiser and less likely to be shocked.

I'm not sure I can put up with some of these painful side effects forever. Yesterday, they made me cry.........I can certainly emphasize with how you are feeling even if the drug causing the problem may have been a different one. The result is the same......what has happened to the quality of our lives? ....But then who are we to complain........we are alive!

Ah.....the dilemma. 

Hope you get back to sleep.....I am going to try again.

Love Karen

Hello Wendymum, 

I too got those pains, but I added multivitamins and minerals plus glucosamine with chondroitin to my daily routine and also waited a month or two, my BCN advised that the side effects come on, get to a peak around 3-6 months and then ease off, she was right! I began really feeling my age (74) and more but now am feeling a bit younger again (in my head I’m only 40-ish and get a shock when I look in the mirror) 

I decided to choose Accord brand and managed to get my GP to add that to my repeats, it might be worth you trying a different brand in case it helps, BUT it may well be the effect that lowering oestrogen will give you anyway. I’m sticking with it, as my test results showed 8/8 for oestrogen! 

best wishes, keep posting, it helps

hugs xxx

       Hi Wendymum,    I am also 74 and have been taking Letrozol for 2 years , didn’t really have any side effects at the beginning but now 2 years on I do get terrible aching joints in the morning and sometimes throughout the day. I sort of get used to the pain and take Paracetamol if it gets really bad and I do suffer some hot flushes , had trigger thumb for a while but it’s gone now, don’t think I will ever stop taking this tablet because my Cancer was Eastrogen led so don’t want this beast returning. Hugs.

Hi again,

i also find regular walking eases the aches (I know, it does sound counter-intuitive!) and I try to do a couple of 2 mile walks a week, minimum, but am about to set off on a lovely country walk of around 5, after I’ve had a bit of lunch. Yes, trekking poles help too, as they do take some weight off hips and knees if you’re out in the country. They take a bit of getting used to (tried them years ago in the Fells and find them a great help) Around town get used to teenage monsters shouting at you! (Yes it’s happened to me!) 

hugs xxx

Hi

I've got painful feet and hands too with letrozol. Keeping moving generally helps. The killer for me is staggering to the toilet in the middle of the night when my feet seem to seize up completely.

I find walking with poles helps and it stops lymphedema by keeping my hand and arm raised.

Funny I got trigger fingers when I was on tamoxifen I put it down to too much knitting.

Hi What

I had trigger finger and it was just an injection into the joint. Hurt a lot. Driving home after was interesting, but it worked immediately.

I was told once oestrogen keeps things moist. Not just the important little places ; ) but joints too so these side effects are logical.

hi , and thank you for responding. I talked myself into getting to bed instead of wittering on more this last night, but last look of the clock and a 'please go to bed' from the dog was at 4am , so didn't do a lot of sleeping even then.

I do have an oncology appt in Sept and will talk then about the options.  No confidence in GP's as they never communicate and different doc's say different things.  Also have kidney problems since chemo finished and that journey starting this week too.  I feel you keep getting knocked down and not always easy to keep getting up again!  Think that's in a song .......

I feel lucky I can still do as much of the 'normal things' in a day, and the aches and pains just become part of that too.  I am on the go a lot and can do over 5 miles in a day, without going far from the house!  (Fitbit for birthday present!)   Interested in your point of no dairy products.  No one has said anything about that to me, or is that something suggested for your own health.  Read a little about parabens , but knowledge limited.  I don't want to go down a route for obsessive behaviour on products.  I feel I have always had a healthy diet and grow a lot of our own produce when we can.  Take recommended daily glucoasmine to try and help with aches and usually fruit juice or smoothie for extra vitamins.  What point do you ever stop worrying about lifestyle, products or food you use I wonder?  Goes back to a point of quality of life and choices I suppose.  

Good luck with sleeping tonight!!

thank you for replying.   Good luck with the aches and the hot flushes!  I had forgotten what they were like until it hit me one afternoon as I made the tea and I felt the need to stand at the door wafting the towel until it got under control!

Take care x