Tamoxifen and lupus

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dmh2418
dmh2418 Member Posts: 64
edited June 2014 in Managing Side Effects of Breast Cancer and Its Treatment

Anyone with Lupus and taking Tamo?  I have to see my oncologist on Tuesday but the Tamo is making my lupus worse.  It feels like I'm in a flare up all the time.  Joint pain and fatigue are the worse.  I had rad but made it through that without a problem.  Any ideas or suggestions?

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  • leaf
    leaf Member Posts: 8,188
    edited April 2011

    I don't have lupus, but I probably have scleroderma.  My specialist said it was a risk vs benefit, but to try to see if my symptoms are better off of tamoxifen.  The specialist said she had a person with breast cancer and tamoxifen and her scleroderma symptoms were better off of tamoxifen, but it was a risk vs benefit situation. (I only have LCIS.)  I stopped tamoxifen in the beginning of October.  I don't see a change in symptoms yet...but I don't know how long the 'trial period' should be.

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  • dmh2418
    dmh2418 Member Posts: 64
    edited December 2008

    Leaf, thanks for the info. I've been on the tamo since the end of July.  I had DCIS and I even took the genetic test and I don't have the BRAC genes so I'm hoping they will think my risk is minimal if I go off the tamo.  I noticed some of the side effects within the first month but not the most common.  I started bruising easily, went into menopause and now the joint pain and fatigue.  I thought it was from the rad but I finished that Oct 24.  I'm hoping these side effects would improve once I go off the tamo, if they let me, and can even do a dose of predisone to make sure it wasn't a flare up.

     Like I keep saying, I guess it could be worse Laughing so I'll take what I have and keep pushing.

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