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.

1 Online
  • 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?
  • casey1231

    Lab results question

    3
    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!
  • JennsJo

    Freaking out!!

    3
    ive had lupus for 7 years and very little issues. I get blood work regularly and for the past year my white blood cell has been dropping. It's at 1.7 and not increasing. My doc took me off plaqunil to see if it increased and hadn't. He called and referred me to s hematologist! I am freaking out!! Any suggestions?? Thanks peeps!:)
  • Picturecrazed

    Sun and lipus

    5
    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?

    0
    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!
  • Jca-Sea

    This is my first time joining a support group.

    3
    My mom thought it would be a good idea for me to be in a support group, so I can know there are others out there that go through the same thing. I've never been a healthy child to begin with, but doctor after doctor couldn't find what was wrong with me. It was around 7th grade when I started going down hill. I was in and out the hospital for many different reasons. I had fainting spells,...
  • deleted_user

    Question about Lupus and Testing

    I have a question. So you are tested for Lupus and you have Lupus. If your Lupus is in remission, and you are tested, will it show up as that you have Lupus, or will it be negative? I guess I'm saying, will your tests show that you have Lupus if you are in remission.Thanks
  • slyster

    Lupus in 60 (an ongoing Instagram series)

    0
    https://www.instagram.com/p/BUzBDoNFMK5/?taken-by=saraggorman
  • deleted_user

    mixed connective tissue disease

    My Rhuemy told me today that I have mixed connective tissue disease.Has anyone else been told this ?Does anyone know exactly what it means? My stupid doctor would not take the time to explain it to me today. Which means I am probably going to start looking for a new doctor. When I asked my doctor he just shrugged his shoulders like he didn't know. Now I know a little from finding things out on...
  • slyster

    Small world

    0
    A friend of mine who lives in Switzerland, was on business in Alabama.  His Lyft driver was PJ Spraggins.http://www.dailymail.co.uk/news/article-3027749/Husband-saves-wife-s-life-donating-kidney-spending-year-dieting-exercising-blood-pressure-low-surgery.htmlI don't know how my friend found this out, but I remember reading the Spraggins' story a year or two ago.  My friend knows my wife has...
  • carrottop50

    lupus and diabetes

    1
    Does anyone have lupus and diabetes??? if so when you are in a flare does your diabetes readings seem higher at that time???
  • deleted_user

    Feet and leg cramps and Night Sweats

    Shew Lord help, I am so tired of these feet and leg cramps. They hurt so bad and the next day my muscles are so sore. And then there are the night sweats. When I FINALLY get to sleep I wake up drenched and my clothes are stuck to me. Hair is drenched. How about incontinence? Anyone having trouble with that??Thank you for listening. :-(
  • sweetpea15

    Hot, Hot, HOT

    1
    Today I had my last loading dose of Benlysta, I now get to go only once a month for it. I'm extremely tired but have not been able to sleep the last few nights. I feel like I am on fire all day long, I have no fever but my skin feels very hot to the touch to my family members. I have never experienced this before, no amount of water or cool shower takes the feeling away. 
  • sweetpea15

    New

    4
    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

    Vaginal Ulcers

    Yeah, this topic might make us blush, but it's part of our reality! Has anybody had experience with these? I have a few times, during flares. They seem to be just like the mouth ulcers. So, I went to the doctor (before I knew I had lupus) and they said, "Any sores in the vaginal area are herpes." That seemed like an unfair statement. They did a blood test that showed that I have the type of...