Has anyone stopped taking letrozole and switched to other aromatase such as Arimidex and Aromasin ???

FormerMember
FormerMember
  • 19 replies
  • 317 subscribers
  • 6327 views

Hi ladies

just wondered if anyone tried switching to another 'cousin' drug of letrozole (that's what my BCN called it) and found it any better?

I am wary to stop taking letrozole but the side effects have been bothering me, stiff joints, painful legs and muscles, endless fatigue.... My BCN mentioned Arimidex and Aromasin

So if anyone tried switching and felt better I would like to hear your stories!

When I read up I find they all cause similar side effects, so would it help to switch at all?

thanks, GC

  • FormerMember
    FormerMember

    Hi there

    I asked the same question on the Letrozole side effects thread a while back but haven't had a reply yet so hope to see some responses here...

    My oncologist has prescribed me Exemestane but as she can't say if I'm going to feel better I'm hesitating, so we are in the same boat! 

    All the best xxx

  • FormerMember
    FormerMember in reply to FormerMember

    hi

    so did you move to the new drug. Exemestane was also mentioned to me so keen to find out...

    I have taken letrozole for around 8 months which did not seem very long. At first I had no side effects at all, for at least 3 months, but then gradually it started to take a cumulative effect and got worse and worse.... now my BCN says I will need to take letrozole or whatever for 10 years and I'm thinking how on earth am I going to cope. So I am keen to change but just wondered if it would work.....

    thanks, GC

  • FormerMember
    FormerMember in reply to FormerMember

    Hi there,

    No I'm still hesitating! : )  And wondering about side effects... : 0

    My oncologist upped my dose of vitamin D and gave me a supplement with magnesium so I'm going to see how they work out before changing.

    I'm only on my 3rd pack of Letrozole, I was fine bone wise up until I finished radiotherapy. I'm lactose intolerant so the original problem was tummy troubles. So basically now I am trying to stick with it a bit longer to see if things improve bone wise and am going to see a nutritionist to find out what havoc it's reaping on my intestine!

    Fingers crossed from dithering me x

  • FormerMember
    FormerMember in reply to FormerMember

    hi

    Oh I see now, in effect your lactose intolerance is probably quite serious,   I understand.

    No for me it would be the fatigue, aching joints and muscle pain which I am getting quite fed up with. I checked the side effects of the 3 drugs and it all seems so similar. It's like needles in haystacks..... I have no idea and I am not sure not taking the drugs as it scares me I will loose protection maybe, although they say it stays in your system for a while..... It is all so confusing.

    thanks, Gina

  • ;

    Hi ladies.

    I too am on Letrozole and have all the side affects you are both talking about.

    I am also reluctant to change as they all seem to have the same side effects so it might just be that one brand suits you better than another.

    I am also on Letrozole for 10 years and my thinking is:

    1. It is keeping the cancer gremlin’s away and ……

    2. Hopefully my body will eventually get used to it!!! (fingers crossed)

    I will say I am back at work and the more active I am the better I feel. I admit I don’t exercise much and some people have said they feel a lot better with regular walking or some other form of exercise. (I’m just too lazy!!).

    I have also started taking cod liver oil with calcium as there was an old post on here that someone said they were pain free while taking this supplement. Too early for me as only started this week however, if it works I will definitely let everyone know as so many of us are suffering through Letrozole.

    If you search 'Letrozole' on here there are pages about it.

    xx

    Love Edwina xx

    Back here again for hubby diagnosed with oesophagus cancer - Sept. 2021   Face palm tone2

    You’re allowed to scream  - You’re allowed to cry  - But do not give up

    MAMMOGRAMS save lives, I'm the proof!!! 

    7 rounds of chemo, finished 30th May 2018. 15 zaps of radiotherapy, finished 26th July 2018.

    I Survived .......... Sadly my hubby did not.Pensive

     

     

  • Hello Ladies,

    I to am on Letrozole.  I can say I have not had too many effects, the main one, which I am praying will ease off as quick as it came on is 'trigger thumb' in both thumbs.

    I totally agree with all that Taralou has said.  I would just like to add this thought.....

    Could these aches and pains be 'side effects' or....... could these aches and pains actually be how our bodies feel having 'less oestrogen' ??

    Would you still feel like this after changing to another type of tablet, or to a different brand? Could the various tablets take out oestrogen in different ways and each of our bodies feel different.

    Maybe it's not a side effect, maybe each of our bodies each react different depending how much the tablet has lessened the oestrogen..

    Just a thought Thinking xx

    I'm hoping this makes sense - only my mind says one thing and my fingers type whatever they like x
  • FormerMember
    FormerMember in reply to WhatHappened

    hello ,  and 

    I have stopped taking the letrozole 2 days ago now, and I am all in doubt.... I guess I was looking for reassurances of those that have switched medication. My BCN mentioned it happens a lot so hoping someone will respond saying they have switched and it improved
    My side effects were increasing though in these last few weeks, as if my body really did not want it. I know one can argue if that is the case it must work well, but having to deal with this for maybe another 9 years and 5 months seems hard.... I work fulltime and these last few weeks have been a nightmare with fatigue and painful joints, muscles, bones, knees and fingers. I can take painkillers but it seems to me that also has a risk in the longterm. I am signed off work for the moment, the first since my surgery and I don't think I can keep a FT job like this, so willing to try out something else for the sake of improving the longterm prospects.
    But as I said I feel quite anxious now, perhaps I should just stick it out.
    GC
  • Hi ladies, 

    ive been on Letrozole 6 months plus now, and yes, the problems do seem to build till around this sort of time frame. My BCN did warn me that this might be the case, so I decided to stay on the Claritin (put myself on it for the aches that I got when taking Alendrobic Acid for osteoporosis) or rather, the generic form, Loratidine. I gather that sticking to the same brand of Letrozole can be helpful, I’m on Accord and my pharmacy have this listed so will supply me with the same each time.ive also put myself on Glucosamine and chondroitin, with approval of my BCN. 

    i Have to agree, it might be the effect of the Letrozole but might ‘just’ be the reduced oestrogen levels? Who knows? 

    My hair thinned too but as I had very thick hair which needed regular thinning that didn’t worry me overmuch. It’s now a bit thicker again, so I wonder if it was the shock of having cancer and three operations within a month (my mx developed a haematoma so was re-done 30 hours later including re-doing the implant) 

    i too have read that similar AI’s have similar side effects, it might be that swapping is like jumping out of the frying pan into the fire?! So I’m sticking with it in the knowledge that it’s preventing recurrence/secondary problems! 

    Hugs xxx

    Moomy

  • I’d been on Anastrozole for 6 months and have had excruciating hand pains, being unable to even tear the loo roll in the morning without crying. I mentioned it to the breast care practitioner / nurse who changed my prescription to Tamoxifen. This was miraculous as the hand pain went straight away although the hot flushes are a bit worse.

    swings and roundabouts! 

    “I am the village crazy lady, I can do what I want”

  • FormerMember
    FormerMember in reply to Purplemarriane

    hello 

    did you stop taking Anastrazole for a few weeks before you switched to Tamoxifen

    GC