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  1. Replies
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    I get those tiny bottles of essential oils,along...

    I get those tiny bottles of essential oils,along with smelling good they have benefits of their own. Just add a few drops to your emu or olive oil,and problem solved :)
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    Just out of curiosity, are you taking plaquenal?

    Just out of curiosity, are you taking plaquenal?
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    Same time every year.................

    First I would like to say that I hope everyone had a great Thanksgiving.
    At this time of the year we should be looking forward to the holidays,but for me this is the time of year I always have bad...
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    Hi Younglupie....I was dx with nephritis earlier...

    Hi Younglupie....I was dx with nephritis earlier this year (stage 4). After six chemo treatments and a TON of steroids I am doing better. Fingers crossed that I will stay that way! I also gained LOTS...
  5. Thread: benelysta

    by Shanna
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    I did. Benlysta infusions for a year, although I...

    I did. Benlysta infusions for a year, although I felt ok, lupus wears still quietly at work. I ended up with stage4 kidney nephritis.My new rhuemy thinks Benlysta is a total waste and shouldn't be...
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    The ice bucket challenge has swept the nation,and...

    The ice bucket challenge has swept the nation,and brought about much needed awareness for ALS. Also known as Lou Gerhig Disease. It has been a great way to raise lots of money and get people to talk...
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    Absolutely, that's what I was suggesting. Thought...

    Absolutely, that's what I was suggesting. Thought this could be a place to brainstorm
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    ALS ice bucket challenge

    I think the ALS ice bucket challenge is a great idea. It has brought so much awareness to the disease and has raised LOTS of $$$$$$! It would be great to come up with an idea to do the same with SLE...
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    Round and circular.....sounds like it could be...

    Round and circular.....sounds like it could be Discoid lupus. Have you looked online? I had the same thing, just on the joints and they biopsied it, came back discoid.
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    That's great that your being aware. Lupus is...

    That's great that your being aware. Lupus is different for everyone, sometimes the strangest symptoms are signs of bigger problems. Don't stress yourself out over them but be sure to talk about them...
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    I'm sorry this has happened to you. It is a lot...

    I'm sorry this has happened to you. It is a lot to take in at once. Take it one day at a time. Yes, that can be common for the plaquenal to cause nausea, and some other side effects. Try to stick...
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    Not saying this applies to you but I have a...

    Not saying this applies to you but I have a client who was dx w/ lupus and thought she had it for several years. Turns out she ended up being later dx
    w/Lyme disease.After treating it,all symptoms...
  13. Thread: extreme fatigue

    by Shanna
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    I have too, been dealing with the dreaded lead...

    I have too, been dealing with the dreaded lead blanket! This last week has been bad,very hard to get out of bed. I haven't been eating much cause I am to tired to get up and make something. I know...
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    Everybody has different opinions on this. I...

    Everybody has different opinions on this. I believe that you should be upfront about your health,that way you are giving him the choice to continue the relationship with all the facts. Plus, that...
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    Just a reminder of how lucky you are. My dr....

    Just a reminder of how lucky you are. My dr. never picked up on my kidney disease until stage 4, I had to do chemotherapy and lots of steroids :( I gained 40 lbs! So pay attention to your body and be...
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    I think a change in elevation might flare things...

    I think a change in elevation might flare things up,I've lived here a long time ,but when I travel to other places I notice it. Is the doctor you found in the valley? I know where Qualwood is, I live...
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    Early on in my diagnosis,it was my hands that...

    Early on in my diagnosis,it was my hands that eventually lead me to the ER. They hurt so bad,I would cry and think that I should just cut them off. I would go thru ice packs like crazy because my...
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    I did Benlysta for about a year, I didn't work...

    I did Benlysta for about a year, I didn't work out for me but my biggest side effects were weight gain and I would be very sleepy for the next couple of days. Hope you do well on it.
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    Hi Julie, Just wanted to say I agree with Steve....

    Hi Julie, Just wanted to say I agree with Steve. You might be able to avoid some of the real bad side effects of Lupus by taking the meds this early in your diagnosis.I can't stress this enough.My...
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    Good luck with the hearing,I never had to go thru...

    Good luck with the hearing,I never had to go thru that so no advice here.
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    I get those too. Are you on Cellcept?

    I get those too. Are you on Cellcept?
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    Just curious, have you ever been diagnosed with...

    Just curious, have you ever been diagnosed with Raynauds?
  23. Thread: hot flashes...

    by Shanna
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    I get these really bad as well, I thought it was...

    I get these really bad as well, I thought it was the steroids (or coming off of them). Is this a normal symptom? I get them so bad my hair will be drenched and the sweat will be dropping g off of me!
  24. Hello..... I just finished with the cytoxan...

    Hello..... I just finished with the cytoxan treatment. I too have stage 4 nephritis. Honestly the steroids bothered me more than the chemo did. I did not lose any hair and it did not make me sick....
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    For just dry skin, which I have badly ...lol....I...

    For just dry skin, which I have badly ...lol....I have been using pure emu oil, a little goes a long way with that stuff. It's a little pricey but it's also beneficial in many other ways, just make...
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