Side effects...letrozole

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Theresanne
Theresanne Member Posts: 90
edited January 2015 in Hormonal Therapy - Before, During, and After

Just checking in..would like to hear back from someone. I have been on letrozole for close to three years now.  The side effects will not ease up!  At the beginning, I started with severe wrist pain..so bad it would wake me at night.  Diagnosed with dequavains tendinitis. Given a cortisone shot and the pain went away.  Oh and yes..three trigger fingers at that time also...they have also gotten better.  Few months later..shoulder pain so severe I was terrified. Lasted for months. Then wake up one morning ..gone. But this whole last year, I am always exhausted. Allergies worse. Eyes so dry..prescription eye drops. And find out I have the beginning of a cataract in one eye?..I'm 53!! Neck and back pain, dizziness, tired all the time. Struggling to excercise every day.  My most recent oncologist visit..bloodwork all great.  I don't know if I can continue with this drug...but I'm too afraid to stop.  If it decreases my risk by even 1%, how can I? Anyone out there feel like I do? 

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  • april485
    april485 Member Posts: 3,257
    edited October 2014

    Although I take exemestane (generic Aromasin) I can so relate to your post. Do I have any answers? No. The only thing you can do is try another AI or just keep on getting through the days until you are done. Hugs...am truly sorry and totally 100% get it since I am suffering too.

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  • Theresanne
    Theresanne Member Posts: 90
    edited October 2014

    Thanks April.  I try every day to keep positive.  I don't think I would stop taking this drug, too scared. But my goodness. Oh and I forgot to mention hair loss...wonderful.  Letrozole...the gift that keeps on giving!

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  • wintersocks
    wintersocks Member Posts: 922
    edited October 2014

    Theresanne,

    I too have thinning hair, at the crown and fringe. Have you read about the possibility that we might be on it for 10 years??

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  • Theresanne
    Theresanne Member Posts: 90
    edited October 2014

    Yes Winter!  I have read about this.  A very dear friend of mine was diagnosed 11 years ago with node involvement...and she is doing great! And she is still on the drug..when she hit 10 yrs her doc said she could go off the drug. She doesn't want to...she now takes it every other day.she is afraid to stop.  She also has side effects but would rather deal with those...are you really from the UK?  Omgoodness! I have never been..Id love to some day! Obsessed with everything about it! Looks lovely!! I have just watched the movie Another Year like ten times!  

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  • wintersocks
    wintersocks Member Posts: 922
    edited October 2014

    Theresann,

    Yes, really from the UK, near to Bronte country, Wuthering Heights etc. We have a lovely Autumn day here.  Don't know the film I will check that out.  I have woken his morning with a very painful wrist and sore fingers especially about the knuckles. I think this is Letrozole? I slept so badly with the most incredible hot flushes and sweats. I guess we know the alternative to stopping it. I can really understand your friends mind set, it has protected her for so long.....no wonder she feels she can't stop it.

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  • Theresanne
    Theresanne Member Posts: 90
    edited October 2014

    Early on, within a few months of starting letrozole, my wrist was so painful I could not open a door, or hold a pen.  I tried ibuprofin, didnt really help. Finally I went to an orthopedic dr. Was diagnosed with tendonitis and was given a cortisone shot. It hasn't hurt since. Unfortunately, other joints hurt. But really not as bad as the wrist. My pains seem to settle in one area, last for a few weeks to months, then move along to another area.

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  • FeelingtheMagic
    FeelingtheMagic Member Posts: 155
    edited October 2014

    Oh my.. I'm a beginner on letrozole. Sorry to hear all of the challenges you are having. I am just a couple weeks into the treatment, and so far no side effects except a bit of stiffness.  I'm started this protocol early, as I'd had a change of brands of tamoxifen and it triggered a ton of side effects. Since I only had a couple of months left of tamoxifen, onc took me off it, and we're on to A.I. a bit early. I know if I have any problems with this, I will request different brands, since I've learned how much that can affect side effects. Might be worth looking into for anyone having problems? 

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  • Ciamarro66
    Ciamarro66 Member Posts: 11
    edited October 2014

    I've been on letrozole for about 7 months now.  I have terrible joint pain.  All my fingers, my knees, my ankles, my neck.  It never seems to get any better.  I too have hot flashes but I also had a total hysterectomy at 47 and was forced into menopause so I'm sure my hot flashes are from both the hysterectomy and the letrozole.  So far I haven't noticed any hair loss.  My hair is just beginning to come back from chemo.  That's the last thing I want.    For those who are having hair loss, how long were you on letrozole when the hair loss started?  Is this something I get to look forward to? lol Good grief.  When does it stop?

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited November 2014

    I have hand/finger stiffness, especially when waking up in the morning: not good for a violin player... 

    Warm water pool exercise is one of my remedies. Other stretching activities help too.

    Sometimes doctors will allow a "drug holiday" (not taking the prescription for a short period of time - up to several weeks) in order to see if the side effects resolve. There are a couple other aromatase inhibitors available that might be better tolerated which you could switch to. Could be worth a try to get a little relief!

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  • justmejanis
    justmejanis Member Posts: 1,847
    edited November 2014

    I too am new to Letrazole after almost three years on Anastrazole.  I had really severe joint pain and took several month long breaks.  I just saw my MO a few weeks ago and he thought the switch would be good for me.  So far I am a little worried as I seem to have hip pain creeping back in.  I have only been on it for a couple of weeks and thought this was a little early to start having problems.  Grrrrrrr.......two more years and I am tossing the bottle for good!  Hurray!

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  • simplelife2
    simplelife2 Member Posts: 93
    edited November 2014


    I just started on Femara a month ago, after taking Arimidex for 6 months with terrible joint and bone pain. I had hair loss like crazy when I started the Arimidex, and I have thin hair to begin with, so I can't afford to lose much more! I was hoping the letrozole wouldn't cause as many side effects....and I'm just starting this journey, with 4 1/2 years to go!!!!

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  • Roshan
    Roshan Member Posts: 3
    edited November 2014
    I have been on Letrozole for just over ten years. My doctor thinks I can stop now, but I am worried to do so. I guess it feels like a security blanket! Is there anyone who has been taking Letrozole for more than ten years?
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  • justmejanis
    justmejanis Member Posts: 1,847
    edited November 2014

    simplelife I hope you and I both have a better time on this med.  I was on Arimidex almost three years.  Anastrazole actually.  I too had terrible joint pain and my MO just switched me as well last month.  I will be anxious to see if we can keep the joint pain at bay.It sounds like there may be a few of us new to this med after being on a different AI.  I wonder why most MO's prescribe Arimidex though before Femara?  Very curious as Arimidex seems to be the more popular drug with MO's.

    Roshan I wish I could help, but I am new to the drug.  I do understand you feeling like it is your security blanket.  What does your MO say?  I would talk to him about my concerns.  Good luck!!

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  • Nash54
    Nash54 Member Posts: 837
    edited November 2014

    Roshan....did you experience any side effects?

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  • Kicks
    Kicks Member Posts: 4,131
    edited November 2014

    Femara was approved on July 25, 1997.  It became available in the generic form - letrozole - on June 3, 2011 when the patent ran out.  There are several different manufactures now who make the generic letrozole.  There are several different companies manufacturing letrozole since June 3, 2011.  There does seem to be different reactions for some between the different brands.

    I have had no negative SEs on Femara then letrozole.

     


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  • Early60s
    Early60s Member Posts: 13
    edited January 2015

    So far, so good! I've been on it for three weeks with no appreciable side effects.

    My med onc told me that AI reduces the risk of recurrence by half and that 3 hours exercise weekly reduces THAT risk by half. My OncoDX score was 25. That seems to be about an 18% chance of recurrence in 10 years (guesstimate based on a graph) without any treatment, reduced to guesstimate of 9% with Letrozole, reduced to a guesstimate of 4.5% with exercise.

    Anybody have better info for that score of 25???


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  • Nash54
    Nash54 Member Posts: 837
    edited January 2015

    Early60s that percentage sounds like what I was told. My Oncotype score was 24. No SE's for me so far. Looks like our treatment plan is the same.

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  • Early60s
    Early60s Member Posts: 13
    edited January 2015

    Thanks Nash54.  Those intermediate OncoDX scores are disconcerting.  There's a plan of action for low scores (no chemo) and a plan of action for high scores (definite chemo), but a wait-and-see plan for intermediate scores!  My med onc had told me in advance that only if the OncoDX was 31 or above would I be a candidate for chemo.  He told me that no lymph node involvement plus small tumor trumped grade.


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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited January 2015
    Early - Thanks for the info on reduction of recurrence risk w/exercise. I had seen similar info somewhere but not laid out quite as succinctly, and it's helpful to see it that way.

    I'm glad to hear you're doing well on Femara; I sometimes think we should have a thread for those who AREN'T having any problems with it :)
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