Lupus Support Group

Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.

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  • Katelyn

    Weight Gain/Moon Face??

    3
    Hi everyone! My name is Katelyn, I am 17 years old, and I was diagnosed with Lupus in April. So far, it has kind of sucked missing school and what not but it definitely could be worse. My main concern as of now is how I look. I understand how superficial that sounds but I look in the mirror and almost don't recognize myself. I have stretch marks all over my body and I felt I just looked terrible...
  • ellycrys

    Suggestions?

    0
    i've been waiting to fing a new gp to get a referral to a rheumatologist for almost a year...   my dermatologist is convinced i have sle based on my biopsy/symptoms/ rash on my face and has me on plaquenil and steroids, plud anti-inflammatories.  That has really helped.   I still have flare ups but they last less time and are less severe.    All of my triggers are the sun, and things that...
  • Michaeldoral

    The cure for lupus!

    0
    First of all, the standard disclaimer, I am not a medical doctor, I am merely a philosopher, and you should always talk to a licensed medical practitioner about medical counsel, etc etc. Having said that, the cure for lupus is seaweed. Lupus is caused by toxic metal poisoning, especially from mercury. The cure is accomplished by chelating (Greek for claw grab absorb) the metal particles which are...
  • London

    ?lupus?

    1
    Was wondering if anyone had a similar exsperience. I was a very healthy 20 something women with just hypermobility and thats it 6months ago. It seems to have all gone wrong since then. I had a early miscarriage 6months ago. Since then i started to get symptoms of lupus which are getting worse. I have no diagnosis as i am still waiting to see reumatoligist in a few months.My gp thinks pregnancy...
  • rcykb1

    Extreme Heat and Lupus

    0
    Hi, I know that I do not do well with extreme cold but I do not recall not doing well in the heat. I had a really difficult  winter, was not stable and in and out of the hospital with what was thought to be a neurological condition but my current rheumatologist thinks is actually my lupus mimicing a neurological condition. We are now having a heat wave and my lupus symptoms are terriable and I...
  • lisamarie77

    Struggling with Lupus

    7
    What is the best resource to learn about lupus? I am sick all the time. I have had a second opinion. I feel like I'm drowning.
  • mysensitiveheart

    terrified and hopeless

    4
    You can read my other post om this board for some backgound about me . Can someone telll me how they were 1st diagnosed ?. I have elevated ANS (?) levels found out through a specific blood screening . Would anyone be generous and kind enough to share your levels with me ? I zm terified since I have so many other medical issues that are draining every bit of my soul , am in constant chronic pain...
  • sweetpea15

    New

    5
    hello, I'm new to this group. I have Lupus, Rheumatoid Arthritis and possibly FEVR or Premature Retinopathy. I have a almost 1 year old daughter. I just started doing Benlysta Infusions and was wondering how anyone else taking this medicine, how it effects them? And how long it takes to start feeling better. I haven't been on medication for 4 or 5 months prior to having my first infusion this...
  • deleted_user

    Cellcept and anxiety/depression

    7
    I have been on 5 mg of Prednisone and added 500 mg of Cellcept for three weeks. I started having anxiety (which I have with higher doses of Pred.) but the longer I took the Cellcept I got increasing anxiety, depression, crying spells, and abnormal thoughts. Even taking 3mg of Klonopin daily did not help and I finally stopped taking it under the advice of my therapist.Has anyone else had this...
  • casey1231

    Lab results question

    6
    Hi all. I have been experiencing extreme pain and fatigue, and my blood work showed ANA of 1:640 and anti smith antibody of 36. I'm confused if the anti smith antibody is considered positive? It's hard to find a reference range and I can't get into a rheumatologist until 7/13. I have no rash. Any feedback appreciated thanks!
  • Picturecrazed

    Sun and lipus

    6
    I was a sun worshiper and I now was dx'd with Lupus. Do I stay out of the sun all together now?
  • kat1d1d

    Double up on Plaquenil?

    4
    Hi all! New to the DS support group. Does anyone take their plaquenil in a daily dose? It messes with my stomach so I've been bad about my morning dose. Is it ok to take all of it at once? In my case at night. Thx!
  • Hi all!Tossing this out there b/c I've become really frustrated with both my rheumy and my dermotologist. They are both really great but beyond saying "yeah, that's the rash" they are soooo not helpful. No matter how much sunscreen I put on (I do all over body and at least three layers on my face + hat) it never goes away completely. And, the sun only seems to make it kind of worse ... meaning I...
  • rcykb1

    MultiFocal ERG

    0
    Hi, Has anyone had a MultiFocal ERG to rule out Plaquenil Toxicity of their Retina. I keep on complaining that the vision in my left is deteriorating and I am not seeing properly but my testing is coming out normal. My docotor is now ordering this test as a baseline and to prove to me that my vision is fine and that there is no active disease in my eye. I am wondering what is involved in this...
  • rcykb1

    plaquenil

    Hi Everyone,I have been taking 400mgs of plaquenil and to day my rhumatologist infomed me that i should reduce the dose becaus the latest research shows that this dose can be toxic. He wants me to be on 300mgs, i should alternate 200mgs and 400mgs daily. Has anyone else been told this?