Skip to content
Ad

Lupus

Also known as SLE - Systemic Lupus Erythematosus

All discussions in this group

Next
  • Medical mystery 10 years now

    Not sure where to start let’s see... Around the age of 19 I started suffering with extreme dry eyes  Dry rashy flushed skin Dry nasal passages scalp Sometimes mouth Cold hands and feet Anxiety depression and sleep issues All test were always negative I did have a speckled Ana in 2010 And Schumer’s...

    Last reply
  • Advice

    Hey all, Just wanting some input and advice. I have just had bloods done and GP wanted to test me for Lupus, as I have the facial rash, painful achy joint and bones, fatigue and gastrointestinal issues. I got my bloods back this morning and I'm confused. My GP didn't explain anything...

    Last reply
  • FES endoscopy

    any body knew different FES surgery with fast track sleep endoscopy why heard like same but why docter said to me sleep endoscopy wasnot surgery we just wantbto know how ur quality sleep..is it true?? or its just for make me not stress??

    Last reply
  • I have some very painful sores/ulcers in my mouth.

    I have one large very painful ulcer just where the tonsil and tongue meet and several smaller ones on the palate above the uvula (dangly bit), also, the palate surrounding the ulcers is reddened. I have booked an appointment with the doctor, but I wondered if anyone could clarify if these might be Lupus...

    Last reply
  • Idk if I have Lupus?

    I'm really just looking for opinions. I don't know for sure of I have Lupus but I've seen ever specialist and the last one is a rheumatologist. I've been having these symptoms since May 2017. Lowgrade fever (when I wake up 97.6. by evening 99.8.), headaches, hair loss, fatigue, pain in...

    Last reply
  • Difficult case has dr stumped- Need help

    I've been sick for many years, but was finally suspected of having Lupus last year and was waiting for the insurance to get approved for my rheumatologist appointment. Today was my first rheumatologist visit. He said my case is very difficult since I test positive and negative on my tests. My...

    Last reply
  • Possible lupus symptoms?

    Hi all, ​I've had the following symptoms for about 2 years: ​-Extreme fatigue ​-achy muscles, particularly back ​-Pain in knuckles with movement and stiffness of fingers when used to hold bags or carry plates, cramping in hand muscles. ​-Low iron levels (may be due to diet though) ​I now have...

    Last reply
  • FED-UP: Should I switch Rheumatologists?

    I'm am so upset. About three weeks ago my Rheumy told me I had Lupus and started me on Plaquenil. Today, after finally getting a hold of him for urgent bladder issues (and then referred to a urologist), he said that he cannot definitively give me a diagnosis of Lupus, but he is 100% positive that...

    Last reply
  • Lupus? Lyme Disease? Something else?

    I’ve had symptoms for over a year but have been humiliated by doctors.. sent to mental health specialists numerous times for anxiety.. I even go back to GP and tell them the specialist I have absolutely nothing wrong and they send me back again!!! I’m the least anxious person ever! I’m 100% sure there’s...

    Last reply
  • Steroids

    So I was just wondering if anyone else notices this but whenever I'm prescribed steroids for a lupus outbreak scars, bug bites, and dark spots heal way faster. It usually takes months or even years to go away. But I noticed when I take the steroids marks go away faster. A bug bite that...

    Last reply
  • Systemic Lupus Erythematosus - Possible breakthrough drug Lupuzor

    Finally there could be hope for millions of sufferers of Systemic Lupus Erythematosus. Today UK company ImmuPharma announced the last patient had received their last dose in its Phase 3 trial of SLE drug Lupuzor (also known as IPP-201101 or Rigerimod) with the trial due to end in January 2018 and readout...

    Posted
  • Fatigue all the time, knee pain and fever. What should I do?

    Hi, everyone. I’m Jenifer and only 22 years old. Recently, I’ve experienced fatigue all the time and knee pain; especially, I feel exhausted in the morning and can’t stand up. Actually, I often take 10-15 minutes to stand and move around my room. Fever sometimes occurs in the evening. These make me can’t...

    Last reply
  • New to all this

    Hi, I do not have a Lupus diagnosis yet but my new primary care provider is leaning towards it. My symptoms that I now recognize as such started last year. I developed an itchy rash above my eyebrows and joint pain. This summer I drove the free lunch bus for the school district. It was very hot here...

    Last reply
  • Lupus diagnosis

    Diagnosed by 5 Dr with lupus ana positive sometimes and negative sometimes DsDna always positive runs about 95 have B12 deficiency low vit D joint pain fatigue brain fog well just moved to another state doctor said not lupus Just my hashsimoto thyroiditis going to a different rheumy. He took me off...

    Last reply
  • Positive ANA and positive Ro/SSA but no diagnosis?

    Back in September, I️ visited my primary care physician due to constant fatigue (completely unable to keep my eyes open sometimes), excessive hair loss, dry burning skin, pain around my jaw and glands, and joint pain in my feet and knees to name a few things. She ordered blood work and my ANA was positive...

    Last reply
  • Lupus and leg pain

    I have got lupus and antiphospholipid syndrome, I get terrible leg pain which feels like growing pains. I used to get it occasionally but recently have been getting it more approx twice a wk. No pain killers help even tramadol all I can do is rub my legs and just go to bed. It's a feeling like the...

    Last reply
  • Could these symptoms be lupus?

    His please tell me could this be lupus? Lightheaded and dizzy for 2 years The veins on my hands and wrists sometimes turn very blue Begun getting breathless, feel like I cannot get enough oxygen and everything goes thick and fuzzy I'm knackered and achy in various parts of my body Pain in elbows...

    Last reply
  • New Lupus Diagnosis - So Many Questions!

    Greetings I am newly diagnosed and after a brief summary of my experience with Lupus so far, I have some questions that I would LOVE answers to! Sorry if its long. Please just skim over the intro explanation and skip to the questions if you don't feel like reading. Its important for me to get answers ...

    Last reply
  • Unknown diagnosis

    Hi. In past 9 months I have had Urticaria that lasted more than week, had difficulties in breathing several times, rush over my cheeks and nose that looked exactly like a malar rush and lasted for 2 weeks and at the same extreme pain in my knees and wrists. I have one lymph node at the back of my neck...

    Last reply
  • A question about lupus diagnosis

    Hello everyone, my name is Lisa, I've been feeling really unwell lately and my rheumy thinks I have early stages of lupus. ANA is 2560 and I have extreme fatigue and aches and pains among other things. I'm 30 and I'm normally a very energetic healthy person so it feels very unnatural. Anyway...

    Last reply
  • Lupus or Herpes help?!?

    So first let me tell you I have been having sex with my ex for 4 months(we broke up in the first month and just had sex for 3 months). We were only having sex with each other until one night he got a ride home from a girl and she guilt trapped him into giving him a b*****b. (idk if its true but she keep...

    Last reply
  • Can you become allergic to plaquenil after many years ?

    Hi everyone, I have been on plaquenil for 8 years since I was diagnosed with cutaneous lupus and sjogrens. .My symtoms were malar rash , joint pain and fatigue .  Never had an issue with it . All of my symtoms disappeared . Recently I was having some health issues that come about a low immune...

    Last reply
  • Overwhelmed

    I was diagnosed with SLE, extreme photosensitivity and connective tissue disease. I also have liver hepatitis which has been ongoing since 2011. I am overwhelmed. My body is literally falling apart. My days are filled with doctor appointments, PT, and trying to control pain.  I take 400mg hydroxychloroquine...

    Last reply
  • Plaquenil

    My name is Tiffaney, I am 37 years of age, (three children 21,18 & 5) I have decided to take myself off the Plaquenil. I have been on it several months now and I am still in pain. I get no support from my family and when I am in pain no one believes me. It truly sad and no one knows how alone...

    Last reply
  • Lupus?Methotrexate?

    Hello! First time in this forum and please excuse my spelling because I am not a native english speaker. I have been diagnosed after changing 3 doctors with atypical Lupus (not having all the symptoms) mostly because I have positive ds DNA (240) but negative ANA,arthitis and constat joint and muscle...

    Last reply
  • very sick,not diagnosed,looking for insight

    Hello guys, I want to apologize in advance for the long post but I would really appreciate some insight and help, I am struggling really badly.  I am a 26 year old European woman and have been very sick for a year now. It all started last November after my gynecologist gave me a shot of progesterone...

    Last reply
  • NO LIVE CHAT GROUP FOR LUPUS PEOPLE???

    I have been looking for a live chat group for people suffering from lupus and cannot find even one??? How is this going to help me??? I went through a major flare up several years ago and have been denying I had this since, until now, I thought I would check out what other people have to say and I cannot...

    Last reply
  • SLE

    I was diagnosed with lupus 14 years ago which took almost 2 years and many, many blood tests to diagnose. At that time I was under the care of a Rheumatologist and a bowel specialist as I developed a very inflamed bowel due to the number of anti-inflammatory tablets I was taking. I have had to change...

    Last reply
  • Lupus Hair Loss

    Good Afternoon, Has anyone eels experienced hair loss. I have lost so much hair that its sad. I don't know if its the Lupus itself, the prednisone or the Plaquenil.  

    Last reply
  • rashes on face lupus

    have rashes on the right cheek and around the ears and there is a red swollen red plus black purple. doctor skin creates skin sample checks and declares me as sick lupus that strikes on the skin only. the doctor gives me pills and cream. I have been conducting ANA and all negative blood tests. after...

    Last reply
  • Differences is diagnosis

    Hello all, So I have recently been diagnosed (kind of) with lupus based on my symptoms that I have an my Ana titer of homogeneous 1:160 and speckled 1:80 and markings for inflammation. I have had constant low grade temps for months and the aches in my bones, joints and hands and ankles and toes feel...

    Last reply
Next


We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.