Are you 55 or younger on Tamoxifen, & having NEW joint pain?

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  • PinkHeart
    PinkHeart Member Posts: 1,193
    edited September 2014

    Tangandchris,

    You may want to hold on to the Rx paperwork that lists joint pain as an SE. Take it to your next onc appointment and show it to doc. Hope your pain can somehow become more manageable. I managed mine by quitting tamoxifen. 

  • smrlvr
    smrlvr Member Posts: 422
    edited September 2014

    My MO is the same way.  I just think some of these doctors don't see a lot of BC patients.  I know mine sees all kinds of cancer patients.  He is also young.  Experience may be the key.  Also, what options do we have?  

  • amyleigh7
    amyleigh7 Member Posts: 2
    edited October 2014

    My mom's best friend is now taking this and she is also suffering from joint pain. She is around 53 years of age and was in good health before breast cancer. I think you're onto something...

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

    I am older than 55 and not taking tamoxifen but any doctor who tells you that joint pain is not a side effect of blocking estrogen is full of crap. Plain and simple. Estrogen is what helps us with lubrication of all of our joints. While tamoxifen may have less people experience this side effect than those of us on an AI, it is still very plausible and likely that this side effect happens to some of you. Tell those doctors who doubt what you tell them that you don't pay them to call you a liar and that the ONLY thing that is different since getting joint pain is taking the tamoxifen. Doctors who poo poo your side effects should be fired. Period. They have no right to tell you it is all in your head or that it is not the drug if you tell them that it is. It is listed as a side effect. Just wanted to write in support.

    BTW, Aromasin has caused me to cry almost every day since I started taking it due to severe joint pain so I feel ya...

  • Moderators
    Moderators Member Posts: 25,912
    edited October 2014

    You may find this page on our site interesting: http://www.breastcancer.org/treatment/hormonal/se...

    Medicines to avoid while taking tamoxifen

    In the list below, the medications under the headings “Strong Inhibitors” and “Moderate Inhibitors” can inhibit CYP2D6 and interfere with the effectiveness of tamoxifen. The medications under the heading “Not Inhibitors” do not block the CYP2D6 enzyme and will not interfere with tamoxifen treatment.

    This list is incomplete and subject to change over time. Use it as a starting place and ask your doctor if any medications you are taking or that are recommended to you are compatible with tamoxifen.

    Strong Inhibitors
    Generic NamesBrand Names
    BupropionWellbutrin
    FluoxetineProzac
    ParoxetinePaxil
    QuinidineCardioquin
    Moderate Inhibitors
    Generic NamesBrand Names
    DuloxetineCymbalta
    SertralineZoloft
    DiphenhydramineBenadryl
    ThioridazineMellaril
    AmiodaroneCordarone
    TrazodoneDesyrel
    CimetidineTagamet
    SSRIs and SNRIs That Are Not Inhibitors
    Generic NamesBrand Names
    VenlavaxineEffexor
    CitalopramCelexa
    EscitalopramLexapro

    Source: Flockhart DA. ©2008. Consortium on Breast Cancer Pharmacogenomics. Indiana University School of Medicine.

    Side effects of tamoxifen

    Tamoxifen's selective estrogen activation effects can cause some serious side effects, including blood clots, stroke, and endometrial cancer. If you and your doctor are considering tamoxifen as part of your treatment plan, tell your doctor if you smoke or have a history of blood clots or heart attack. If you're taking tamoxifen, call your doctor immediately if you have any of these symptoms:

    The most common side effects of tamoxifen are:

    Hot flashes or night sweats from taking tamoxifen can be troubling. But a 2008 British study suggests that women who experienced hot flashes and night sweats while taking hormonal therapy medicine were less likely to have the breast cancer come back (recur). Knowing that this side effect might indicate a reduced risk of the cancer coming back may help some people stick with treatment despite the side effects.

    Some women on tamoxifen have reported memory problems while taking the medicine. While no definitive results are available yet, the ongoing Co-STAR (Cognition in the Study of Tamoxifen and Raloxifene) trial is looking at the effects tamoxifen and Evista (chemical name: raloxifene), another SERM, have on memory and thinking.

  • Jennie93
    Jennie93 Member Posts: 1,018
    edited February 2015

    OK, I have been off of tamoxifen for a month now and the joint pain is no better, someone please tell me that it will stop!! If there is no hope I might just go jump off the nearest bridge. Almost serious.

  • NickiDanny
    NickiDanny Member Posts: 30
    edited February 2015

    I'd been taking Tamoxifen since 2012, and like someone else mentioned - it was like the SE's from Neulasta for me. I played the off/on for a bit, stopped it before participating in DirtyGirl Mud Run so I'd have even a small chance of completing it. My MO strongly felt the Tamoxifen was causing my hip and leg pain. I had a hard time even walking up stairs. I've been off of it now for about 7 months for blood clotting related issues, and though the pain has not gone completely away, most of it has. Hang in there!

  • bratscher
    bratscher Member Posts: 17
    edited February 2015

    I just turned 51, have no history of arthritis or joint pain, and since starting tamoxifen just over 2 weeks (yes, weeks) ago I feel like a little old lady, with stiffness/pain in my hips, fingers, wrists, ankles, and shoulders. This concerns me because my two favorite activities are music (I play a stringed instrument) and long-distance running.

    I asked my oncologist about this and she was fairly noncommittal, saying the side effects often resolve after "some time" and urging me to stay on tamoxifen at least 3 months, until my next visit. I am seriously considering taking 2 weeks off tamoxifen to see if any of this goes away. If it came on within 2 weeks, maybe it will go away just as quickly. Also, I figure that if I'm supposed to take this stuff for 5 years, a couple of weeks' break isn't much in the grand scheme of things, maybe?

  • shoppygirl
    shoppygirl Member Posts: 694
    edited February 2015

    Bratscher

    Have you tried supplements ?

    I too have joint issues from the Tamoxafin that have subsided over time but the vitamins have helped the most.

    Here is what I take:

    Glucosmaine

    Bromelin

    Omega 3

    Vit d.

    They take a while to kick in but they do work!

    Good luck

  • bratscher
    bratscher Member Posts: 17
    edited February 2015

    Shoppygirl, I take glucosamine/chondroitin, also vitamin D + calcium. Also, since I have osteoporosis, I take fosamax once a week. Despite all this, I have joint pain that just appeared out of nowhere since I started tamoxifen 16 days ago.

  • sandylo
    sandylo Member Posts: 16
    edited February 2016

    i started on arimidex and after three days couldnt pick a kettle up was on so much pain I stick it for two years then exemerstane not much different then letrozole took me to my five years I've wished them away hoping it would all stop eventually my onc discharged me eleven days ago and said now they have decided we have to carry on for another five years and sent me out on tamoxifen now on top of all the pain im having bad headaches and dizziness going to see gp tom as the hospital don't want to know now sandy

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