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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  • 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...
  • Eprybylo

    What do you think of this rash?

    3
    Hey everyone, I'm 33 and I've had hypothryoidsm for years but in the past few years I've notcied my hair thinning out. I've got a rash on my face ( rosacea?sp?)  I have body aches, fatique my eyes are dry and red. My tounge frequently gets swollen and sore as does my throat. I have digestive problems. My doctor did my ana and it came back positive and now I head to the rumatologist. I'm hoping...
  • mccourtjs

    Lower leg pain

    5
    Does anyone have pain in their lower leg. It feels like the pain is in my bone. There is no pain when my leg is touched but it aches especially at night. I have to ease into walking after sitting due to stiffness. Any thoughts would be appreciated
  • sweetpea15

    New

    3
    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...
  • FiveHeifers

    Pain/Fatigue/Strength

    3
    I am new to this kind of stuff. The nearest lupus support group is 8 hours away from where I live so I have turned to the internet. I have been reading and obtained alot of information from all. Quick history, found positive ana while in hosp for pancreas divisum in 2013. In 2014 started having joint stiffness everywhere when getting out of bed or just sitting for 5 min. It got worse, thought I...
  • Dynastinae

    New to this group, hello!

    7
    Hello Everyone,I am new to this group and was hoping I could get some advice on exploring Lupus with my rheumatologist. I am seeing a new one in a couple of weeks. The last one I saw did not seem interested in exploring any possibilities aside from a fibromyalgia diagnosis despite my unexplained elevated ANA levels. I tested negative for all the other blood tests for lupus, RA, sjogrens, etc. but...
  • rcykb1

    plaquenil

    6
    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?
  • Logold5

    Lupie diagnosed with unstable angina

    1
    Hi. I've had lupus 23 years. Started have Angina in November. All tests were normal but I was still symptomatic. Cardiologist knew how lupus affects the heart and started treatment despite lack of abnormalities on nuclear stress test, echo, and etc. Cath was done and blockage shown. Too small to insert stent. Treating with Cardizem, aspirin. Isosorbide, Simvastin, and Diovan. Meds adjusted 3...
  • fallingleaves

    Sinus Inflamation

    Hello allI am miserable  with daily sinus swelling and pain causing headaches.My dr has me on antibiotics and i'm taking over the counter meds ,also netti pot rinses.I am not getting better.the inflamation is so bad and has been bad for 2 months now.i have no mucus in my nose.Just swelling and post nasal drip.Is anyone else here having their lupus attack their sinuses?
  • WifeofLupus

    Low Blood Platelet count?

    1
    My husband had platelets at 255 in July and by December they had dropped to 50.  Went through a few months of steriods to boost them but as soon as he stopped they went back down.  Lowest so far was 32.  They did a bone marrow biopsy to check for cancer or something and it came back ok, he is producing platelets...something is destroying them and thinking maybe the Lupus.  Wondering...
  • leelee

    And the symptoms grows as my ANA patterns changes

    4
    Hi everyone it's been awhile but I've been trying o maintain of what I remember to be a normal life for me. As the years go by, the symptoms increases. I'm now prepared to go to Rheumy number 3 trying to find out what going on. This week have already started out terrible I feel terrible. The dr. gave me another Rheumatoid panel exam. My ANA still came back positive but my pattern changed from...
  • Hawk65

    Possible lupus

    3
    I have not seen a rheumatologist yet, been seeing a neurologist for symptoms. Have had a variety of symptoms. The big ones are fatigue, nerve pain and leaky feeling in head and chest. Echo for heart and MRI of brain was normal. I have not had a chest x ray. Stomach and GI problems also, with tests showing those are fine. Been discouraged and was wondering if anyone diagnosed with lupus has had...
  • Jenkay75

    New here

    2
    well my neurologist wants to test me for Lupus and some mixed connective tissue disorder. I'm not too familiar with the symptoms anyone help me I'm scared.
  • gardenchic

    Quality of life

    3
    Hi folks,i was dx'd with Mixed Connective Tissue Disease (Lupus, Scleroderma and Polymyosits) and a bunch of other conditions 10 years ago. My main symptoms and joint, lung and fatgue issues. I've managed to work full time through most of that and support myself. I'm finding though that in recent years its been getting harder and harder to take care of myself (my mom does most of my cleaning...
  • Dustmite

    Blood tests for lupus.

    2
    I am new to this site. I picked up my blood tests two days ago. My appt with my new rheumatologist is on the 27th. I'm driving myself crazy trying to figure out these labs. I have a positive ana and a high am rnp (1.9). SED rate of 16. The other Smith extractable nuclear an is 0.9 (2  of those same score) so is this sle , mctd, drug induced lupus?  Any help would be much appreciated. I have...