Lupus after chemo?

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Lori271
Lori271 Member Posts: 3
edited December 2017 in Chemotherapy - Before, During, and After

Gday all.

Wondering if anyone has had a similar experience & can share or give advice.

I had stage 2 bc, mastectomy, act taxil chemo followed by neuropathy, diagnosed with rheumatoid arthritis & fibromyalgia.

I have recently moved & different dr care & testing is saying there is no rheumatoid but rather lupus. I believe strongly that this is caused from the chemo & was an immediate side effect incorrectly diagnosed but is now lasting 2 years. I don't know much about lupus, how to manage or rid myself of it.

If anyone has experiences or advice, I'd very much appreciate you sharing.

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  • rljes
    rljes Member Posts: 547
    edited November 2017

    Hi Lori - I have not started Chemo yet - but was diagnosed with Lupus 2005 and sent to the Mayo Clinic where they said I did NOT have Lupus.  I have mixed connective tissue disorder, Fibromyalgia, Scleroderma and Dermatomyositis.  See a Rheumatologist - IF you have Lupus, you will need a Doctors care. Its not something you can take care by yourself.   Find a good Rheumatologist is the key.   Take care. 

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  • BCsurvivor2012
    BCsurvivor2012 Member Posts: 5
    edited November 2017

    Hi Lori,

    I was wondering the same thing. I got neuropathy during chemo. I've had terrible joint and muscle pains that have gotten progressively worse since finishing. My last appointment with the oncologist I complained about always being either in pain or at minimum, uncomfortable. He did an ANA test which came back positive. He's directed me to go to a rheumatologist. I had the same chemo cocktail (Carboplatin and Taxotere with Herceptin).

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  • Mermaid2
    Mermaid2 Member Posts: 1
    edited November 2017

    Hi Pinksters, I finished chemo (AC and taxotere) on October 31, 2017. I find that I have days wherein my whole body hurts, even my hands. My feet and knees hurt everyday. I have fibromyalgia and had it before treatment. Onco said it "might get worse". I'm not sure if I'm still recovering from chemo and radiation, or if its fibro flair, or because I was taken off all hormones. Did anyone's fibro get worse? I heard that I will feel better in about a year . . . any discussion is helpful. thank you!!!

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  • Lori271
    Lori271 Member Posts: 3
    edited December 2017

    Thanks for replying. Sorry about your struggle. I have yet to have a follow up with the internist or rheumatologist yet but will keep you posted about any successful treatment.

    I have however, started treatment with a private physiotherapist. For anyone in the Ottawa area, Haley Physiotherapy specializes in cancer patients pre & post op & treatment. I have felt very reassured & hopeful with recovery since my first visit. I didn't know there was such a thing so I'd suggest to check out if there is someone in your area who does the same. Ive received massage, dry needling, laser therapy for scarring & muscle pain as well as knowdgeable advice for therapeutic exercise & even garments to wear to help with lymphedema.

    Please keep me posted with any success you have dealing with lupus also. Take care

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  • rljes
    rljes Member Posts: 547
    edited December 2017

    Hi Ladies, 

    when I was first dx with Cancer, my Rheumatologist said Chemo might help with the mixed conx tissue and Fibromyalgia - so did my MO - we shall see!  I used to take Methatexate, and it did help with my skin issues. 

    Take care!

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