Anyone Have Joint Pain on Tamoxifen?

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pupfoster1
pupfoster1 Member Posts: 1,484
edited June 2014 in Stage III Breast Cancer

Hi girls,

Been on Tamoxifen for well over a year now.  Just started to have joint pain periodically in my knees, but more consistently and stronger in my hip joints.  Ibuprofen does seem to help a bit, but it doesn't seem to be going away.  I am "hoping' that it could just be arthritis (I'm 49) or an SE of the Tamoxifen, but it seems like a long time out to just now have an SE to me. What do you all think?

Thanks,

Sharon

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  • tkone
    tkone Member Posts: 511
    edited August 2011

    Yep.  I have been on it for almost 3 years.  My ankles kill me every single day.  I'm not sure if it is a Tamoxifen side effect or a menopause side effect or both.  I hate it.  It makes my ankles feel weaker and unstable and I feel like an old woman all the time.

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  • jancie
    jancie Member Posts: 2,631
    edited August 2011

    I had extreme pain in my hip joints and knees while on Tamoxifen.  I lasted 1.5 years and switched over to Arimidex.  Still have the pain but not as severe.  I met with my oncologist today and said "I am not even going to complain about all of my joint pain because we have discussed this time and time again"  With that being said, my oncologist smiled. 

    I do exercise a lot but am not convinced yet that it really helps me with the pain.  I was on Lortabs and then Percocet and morphine pills for close to 2 years.  I am now learning to just deal with it as best as possible.  So here we are two years into hormonals and I still have this issue.

    I can't wait to hit year #5!  My luck the study will come out that we need to stay on it even longer.

    Maybe you could ask for some pain meds for the times it is really bad.  I only medicated as needed.

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  • Letlet
    Letlet Member Posts: 1,053
    edited August 2011

    Me! Woke up this morning with achy hips, back and ankles...i have a long way to go, its just my 3rd month on it....

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  • pupfoster1
    pupfoster1 Member Posts: 1,484
    edited August 2011

    Thanks girls,

    Sorry to hear so many of you are having this issue too (but isn't good to be here to complain about it?:)).  I guess what I'm reallywondering if the SE's could take this long to start.  I've been on it for about a year and a half.

    Thanks,

    Sharon

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2011

    Sharon,  I'm so miserable on Tomoxifen.  Hip pain and femor pain.  What depresses me most is that I'm depressed on it and the weight gain has just got me totally freaked out.  I can;t stand being on it.  I actually went off it a month felt better lost a little weight, and went back on it and the pounds came back on.  I honestly feel a lot of my joint pain is from the extra weight I'm not used to.  I've gone up 3 sizes. I'm not even comfortable in my own body.  I have so many beautiful clothes I can no longer wear.  Today I have an appointment with my BS for a follow up, and I just want to dump on him about  it.Frown  And I live on OTC pain meds.

    image

    Barb

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  • clariceak
    clariceak Member Posts: 752
    edited August 2011

    Does it seem to worsen with a change in the weather? If so, that might help put your mind at ease. I realized I was officially aged by femara when I could predict upcoming rain with my bones. 

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  • americanpinay
    americanpinay Member Posts: 338
    edited August 2011

    Me too! I've been on Tamoxifen for close to two years now and have had on and off joint pains. What I've noticed is that side effects come and go. Hang in there. Take care.

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  • sandiedbella
    sandiedbella Member Posts: 4
    edited August 2011

    Shanagirl - talk to your onc about an anti-depressant.  I felt the same way shortly after starting Tamoxifen a year ago, and my onc explained that it can cause a chemical imbalance that can be rectified with an anti-depressant.  I was wary, but tried Effexer, and three weeks later, felt like my old self again!  Good luck!

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  • Flamin_nora
    Flamin_nora Member Posts: 52
    edited August 2011

    Hi---when I started taking Tamoxifen, I too went thru about 2 months of joint pain that subsequently went away.  It came back again (even worse) this winter and was very uncomfortable---my hips, my ebutt bone, etc daytime and nightime.  Thought perhaps it was weather-related.  I also noticed that I was putting on weight and was (more) irritable (than usual). 

    Not sure if I can confirm the cause, but I can tell you that just before this "bad patch", I had been switched over to the generic version of Tamoxifen (novo-Tamoxifen).....a few months later, I asked the pharmacist to give me the  Apo-Tamoxifen (label) that I had previously been taking and sure enough my SE symptoms  were greatly diminished.......mind you winter was also over.....

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  • pupfoster1
    pupfoster1 Member Posts: 1,484
    edited August 2011

    Thanks again ladies,

    I'll try to ride it out for now and not start worrying---again.  It does seem to be better or worse at times, so that is somewhat reassuring.  I guess I was worried as I hadn't had any real issues with it at the beginning, and it's now a year and a half later............

    Barb, PLEASE talk to your onc about this, and I agree w/Sandie, maybe an antidepressent would help and you can stay on it a bit longer.  OR see if they can switch you to an alternative.  I just signed up for Weight Watchers today and immediately went to the gym right next door.  I did WW about 10 years ago along w/working out and was never in better shape.  Granted I'm 10 years older and have had this crappy disease, plus chemo induced menopause so I know things could be different this time.  Still, I have GOT to drop about 20 pounds minimum to make myself feel better.  So, maybe we can team up!  Anyone else out there????

    Sharon

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  • Letlet
    Letlet Member Posts: 1,053
    edited August 2011

    oh man it's so true about the rain. I woke up one day super achy and it was a rainy day. I didn't think much of it until it happened again on another rainy day....

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2011

    My joint  and muscle pain is definitely worsened when there is a storm coming.  It seems any change in barometric pressure triggers the constant joint pain to worsen.

    image

    Barb

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  • Bugs
    Bugs Member Posts: 1,719
    edited August 2011

    Yup.  Hips for sure!

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  • kimber3006
    kimber3006 Member Posts: 586
    edited August 2011

    Me, too.  Hips, knees, ankles and especially my feet - owowowowowwwww!  Maybe we should just consider it boot camp for old age?  ;)

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