Anyone with lupus?

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Candy42adore
Candy42adore Posts: 40 Member
edited August 2016 in Introduce Yourself
Definitely not new but am dealing with a new obstical & looking for buddies who face the same or similar challenge. Anyone trying to loose weight with lupus or other autoimmune?

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  • Sarc_Warrior
    Sarc_Warrior Posts: 430 Member
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    I was recently diagnosed with sarcoidosis. Add me
  • mommy2bande92585
    mommy2bande92585 Posts: 2 Member
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    I have lupus as well and it does present its own set of challenges
  • Candy42adore
    Candy42adore Posts: 40 Member
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    May I add you as a friend?
  • voidamina
    voidamina Posts: 3 Member
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    I have lupus!
  • peaceout_aly
    peaceout_aly Posts: 2,018 Member
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    Fellow Lupie friend here! Actually having a major flare-up at the moment, going through different treatment options at the doctor tomorrow morning. Feel free to friend me!
  • lam_rohland
    lam_rohland Posts: 5 Member
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    I'm here ... Newly diagnosed (3 wks ago) and now 6 lbs heavier (due to lack of exercise and I think, steroids). I'm looking for support and friends to help combat this weight gain, take it off and live healthy!!
  • EttaMaeMartin
    EttaMaeMartin Posts: 303 Member
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    i have lupus...for many years. now have autoimmune hepatitis due to the lupus. on steroids for life..presents a greater challenge to weight loss, fatigue, and everyday life. have to choose my activities for the day carefully before i am too drained to function.
  • EttaMaeMartin
    EttaMaeMartin Posts: 303 Member
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    lam_rohland wrote: »
    I'm here ... Newly diagnosed (3 wks ago) and now 6 lbs heavier (due to lack of exercise and I think, steroids). I'm looking for support and friends to help combat this weight gain, take it off and live healthy!!

    steroids make you retain water, more hungry and come with so many complications if taken long term. google supplements to help with long term use. i take anything to help.
  • EttaMaeMartin
    EttaMaeMartin Posts: 303 Member
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    peaceout_aly wrote: »
    Fellow Lupie friend here! Actually having a major flare-up at the moment, going through different treatment options at the doctor tomorrow morning. Feel free to friend me!

    would be interested in knowing what treatment is recommended. message me. thanks jennifer
  • EttaMaeMartin
    EttaMaeMartin Posts: 303 Member
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    Candy42adore wrote: »
    Definitely not new but am dealing with a new obstical & looking for buddies who face the same or similar challenge. Anyone trying to loose weight with lupus or other autoimmune?

    nice to know there are others going thru the same difficulties, but maybe different degrees!
  • EttaMaeMartin
    EttaMaeMartin Posts: 303 Member
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    would be interested to know how everyone's day goes. i am good in the morning and fade by 4-5. i am out by 6. i have severe fatigue due to yhe lupus, but more so the hepatitis, for which there is no cure. i can also only take certain meds to to chronic pancreatitis. feel free to add me as a friend. maybe we could have our own little group?
  • peaceout_aly
    peaceout_aly Posts: 2,018 Member
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    EttaMaeMartin wrote: »
    peaceout_aly wrote: »
    Fellow Lupie friend here! Actually having a major flare-up at the moment, going through different treatment options at the doctor tomorrow morning. Feel free to friend me!

    would be interested in knowing what treatment is recommended. message me. thanks jennifer

    I've already tried Naprosyn (unsuccessful) and Benlysta (unsuccessful) so they are now leaning towards some type of immune suppressant which would need to be administered weekly by IV. Lots of pros, but also lots of cons so I'm really debating on whether or not to follow through with the recommendation. Might feel better for a short time, but tons of weight gain, skin issues, potential kidney issues, that go along with it.
  • chunky_pinup
    chunky_pinup Posts: 758 Member
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    I have SLE and was dx'd about nine years ago. Had my share of near-death experiences, flares that seemed to never end, and steroid gain, followed by extreme loss. I also have Fibromyalgia, Chronic Migraine and Behcets Disease. Feel free to add me!
  • Derek_McC
    Derek_McC Posts: 63 Member
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    Diagnosed with Lupus (SLE) in 1991. Went through Chemo in 1994-1995. I have been in remission since then and living with the damage that was done (lungs, kidneys, and hip replacements due to treatments). I now only get bloodwork every 3 months and it suggests Lupus activity, but only mildly. I will answer questions and provide any support I can.
  • EttaMaeMartin
    EttaMaeMartin Posts: 303 Member
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    does anyone deal with the chronic fatigue? if you don't mind sharing how and what you do? thanks jennifer i was diagnosed 20 years ago, but the attacking my liver has been going on for the last 2 years, contributing to more fatigue.
  • EttaMaeMartin
    EttaMaeMartin Posts: 303 Member
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    peaceout_aly wrote: »
    EttaMaeMartin wrote: »
    peaceout_aly wrote: »
    Fellow Lupie friend here! Actually having a major flare-up at the moment, going through different treatment options at the doctor tomorrow morning. Feel free to friend me!

    would be interested in knowing what treatment is recommended. message me. thanks jennifer

    I've already tried Naprosyn (unsuccessful) and Benlysta (unsuccessful) so they are now leaning towards some type of immune suppressant which would need to be administered weekly by IV. Lots of pros, but also lots of cons so I'm really debating on whether or not to follow through with the recommendation. Might feel better for a short time, but tons of weight gain, skin issues, potential kidney issues, that go along with it.

    steroids? methyltrexate?

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