AIs or Tamoxifen for women with existing severe joint pain?

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Scherzo
Scherzo Member Posts: 1
edited March 2018 in Hormonal Therapy - Before, During, and After

There are lots of discussions about how bad joint pain can be after you start taking AI's or Tamoxifen. I've had severe arthritic pain in my hands for 10+ years, & I have to make a decision about whether to take either (or neither). Has anyone else been in this situation? Thanks for any advice.


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  • dtad
    dtad Member Posts: 2,323
    edited February 2018

    Hi there. I do not take anti hormone therapy. However aromatase inhibitors seem to be harder on the joints than Tamoxifen. Good luck and keep us posted.

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  • 3dognitemama
    3dognitemama Member Posts: 16
    edited March 2018

    I also already had joint pain in multiple joints prior to beginning tamoxifen. Very quickly after, I began having lots of hip pain, one area that had not ever been in pain previously. I went to a rheumatologist, even tho my arthritis is osteo, to see what he could recommend for pain. His recommendation was to stop using a drug that does that much damage to the body. I should have listened to him.

    I stayed on it, but in Nov '17, I stopped it for 3 mos to stop nite sweats so I could have dermatology allergy patch testing done (the patches have to stay dry for 5 days). After 2.5 mos off of it, I found the real me again. I felt happy for the 1st time in 2 yrs. I slept deeply & had less pain. Now, I have degressed to stage 4 osteoarthritis in both knees & a hand. I need 1 knee replacement now, but due to travel restrictions after replacements, I have to hold off, so I can be ready to fly on short notice to care for my parent(s).

    I went back on it, w/in 2 wks all the bad efx returned; I realized just how depressed I am while taking it. After more research in medical studies on how tamoxifen affects the different body systems, I was ready to stop it. When I finally found the website w/ the risk assessment tool for finding your risk of further cancer, w/ and w/out tamoxifen, based on your cancer details, I learned that I had a 13 mo longer life benefit if I used tamoxifen for 5 yrs, versus not using it. I've probably lost more mos than that on expected lifespan from the 20 lbs I've gained since starting tamoxifen, & the sleep deficit from tamoxifen.

    That cinched it for me. I have checked myself out of the prison of torture I've existed in for 2 yrs, & I am taking back my quality of life. I am now at more peace than I have been since the start of this journey. I have crawled out from a rock of oppression, & I'm not looking back.

    My sis-in-law was put on AI; she is younger than I am. By the time she gets home from work, she has to use a wheeled stool, or literally crawl, she is in so much pain. Sometimes, she just cries as she tries to function

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  • pupmom
    pupmom Member Posts: 5,068
    edited March 2018

    Everybody is different. Most do not suffer such debilitating SEs. I've been on Aromasin and Tamoxifen for over 6 years, and the SEs have been very manageable.

    On edit: I did not have severe existing joint pain before these meds, so I think my response is irrelevant to the conversation.

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