5 Things You Didn’t Know About Lupus

Women, minorities affected most

tired black woman on edge of bed

When I mention lupus to my patients, sometimes I get a confused look because it’s not a well-understood condition. People wonder why the body would attack itself, as is the case with lupus and other autoimmune diseases.

Here are five things many people don’t know about lupus:

1. Lupus affects nine times more women than men, and more women of color than white women

I’ve diagnosed men, senior citizens and toddlers with lupus. But women of childbearing age — 13 to 49 — are far more likely to be affected.

Genetics also plays a role. If you’re a woman with no family history of lupus, your chances of getting lupus are about one in 400. If your parents or a sibling has lupus, your chances jump to one in 25.

African-American and Latina women with no family history of lupus have about a one in 250 chance of developing the disease.

2. Lupus symptoms can differ greatly from person to person

Some symptoms are common to other conditions, too, which can make diagnosis difficult. Common lupus symptoms include:

  • Constant fatigue
  • Achy joints
  • A butterfly-shaped rash around the cheeks and nose
  • Hair loss
  • Blood clots
  • Sensitivity to light
  • Chest pain when breathing
  • Mouth sores
  • Swelling in the extremities or around the eyes

3. Lupus is a disease of flares and remissions

Lupus flare-ups can be mild, or they can be severe. At least 75 percent of people with lupus have arthritis and skin rashes. Half have kidney problems. Lupus patients are also more vulnerable to infection than most people.

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4. Lupus may often be diagnosed with some simple tests

When I suspect lupus, I will order an ANA (antinuclear antibody) blood test.

A negative ANA test usually rules out lupus.

We know that ANA tests will come back positive in virtually everyone with lupus. However, some people will have a positive result even though they do not have lupus. When the test comes back positive, other criteria has have to be measured.

In those cases, I compare the patient’s symptoms with a list of 14 criteria for lupus. If they meet four or more of the criteria, they are usually diagnosed with lupus.

5. Treatment depends on the type of flare-ups you have

Mild swelling and joint pain may be treated with acetaminophen or a non-steroidal anti-inflammatory drug like naproxen, or ibuprofen.

Plaquenil, an anti-malarial drug, treats skin rashes, arthritis, and sometimes fatigue.

Rashes may be treated with topical steroid creams. And corticosteroids like prednisone and immunosuppressants (chemotherapy type drugs) treat serious kidney problems.

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It’s good to remember that diagnosis and treatment of lupus keeps getting better. Ninety-five percent of lupus patients have a five-year survival rate today, compared to 5 percent in the 1950s.

And many people with lupus have a mild form. I tell my patients that proper medication can even help people with severe lupus control their flare-ups and live productive lives.

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Howard Smith, MD

Howard Smith, MD, is Staff Rheumatologist at Cleveland Clinic and Adjunct Professor of Medicine at Case Western Reserve University.
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  • AAF

    I wish my doctor had told me when I was young and suffered from lupus (badly) that when it was over, it wasn’t REALLY over. Later, I was dx’d with Sjogrens Syndrome and told that when you have or have had Lupus this often comes down the road later. Sigh.
    Anyway, as someone who has endured all sorts of auto immune issues, I feel it is imperative to eat in a healthy manner. I have recently read that many people with Lupus and related illnesses are OFTEN gluten sensitive.
    I have been avoiding bread, pasta…etc. and my Sjogren’s symptoms have CLEARLY reduced. I did the same thing when my lupus was very active and noticed improvement back then as well.
    This is something your doctor (rheumatologist) will likely NOT tell you. You have nothing to lose to try it. Eat healthy…avoid wheat, sugar, alcohol and junk food in general. Also, pay careful attention to other common allergens like dairy, peanuts, etc. and avoid them if they seem to make you flare as well. Consider following up with an integrative or functional medicine physician.
    Be well…be happy!

  • Linessia Church-Rush

    My first diagnosis of lupus was over ten years. every rheumatologist that said i had lupus say later i don’t. Then say isn’t that great news? How can it be great news when you haven’t figured out what’s wrong with me. Not to mention they all wanted me to continue taking the plaquinil, and continue seeing them. What am I doing all of this for, if I don’t have it? Can’t forget the fact that I suppose to have the symptoms, but there’s nothing wrong with me. So, now when I get sick I just go to the hospital until I get better for some strange reason.

  • Connie Bastunas

    I was diagnosed with Lupus but my ANA test were negative.

    • anna

      How did they dx you with lupus when ANA was negative? I ask because they think I have it and ANA is neg so they say no. thanks

      • Shelly

        Ana, my Doctot ordered the Comprehensive Diagnostics Panel, ANA IFA Screen w/REFL to Titer and pattern, ANA Screen IFA and DNA (DS) Antibody. The Double Stranded DNA Antibody test (DS Antibody) Will be positive if you have Lupus. Good luck!

        • Esha

          Hello my name’s esha n i am 20 now my lupus was diaganosed when i was 16 m jst scared dat how my married life would be

    • Darla

      i have had. Lupus for 10 years and my ANA has been negative most of the time. i get ths butterfly rash and have had severe kidney problems.The diagnosis was made through criteria not ANA!

    • Sheri Fehr

      Hello my name is Sheri and I was diagnosed with Lupus, sjorgrens, ulcerative colitis and bunch more. I had positive test back for lupus for 8 years. I was doing OK with my treatments from a wonderful doctor Mundweiler, until I moved to Easley South Carolina. They wanted to reinvent the wheel took me off all my lupus medications after they tested me because the test results came up negative for lupus positive for Sjogrens. They then decided they were not going to give me my plaquinel or my shots that I was getting. Ivan went into the worst player of my life I could barely move every joint in my body muscle everything hair fingernails ached.I told them and show them my results from Illinois they proceeded to tell me my tests are negative at this point so I do not have lupus but for 8 years I had lupus I do not understand you I’ve never read that you can have Lupus and suddenly it go away. By then had to find other doctors who would listen and look at my previous test results I finally got one to get me back on my plaquinel I’m still not doing so great or even close to what I was when I lived in Illinois. I thought moving into South Carolina for better weather would help my condition but the doctors down here are poorly educated and as I said before try to reinvent the wheel I wish I could get some money to listen to me I don’t understand I have proof from Mayo Clinic in Minnesota and from Rockford Illinois and Freeport Illinois all tests done and Madison Wisconsin all the tests were positive why am I going through this. Y don’t they believe it I break out in a severe rash when I go into the Sun and get so very ill that I can barely get off the couch for days. The fatigue is terrible the joint pain is awful the only thing that I have to look forward to every day are my dogs and my husband. I did receive disability and 2010 which was after I had open heart surgery for a tumor. Also due to the colitis attacks that are very severe and my diet which I can’t eat anything without being sick or have diarrhea I am in constant stress do to the doctors not wanting to look at the past results. If you’re still out there please send me an email I would like to discuss this with you thank you very much for listening.sheri

      • Kimberly S

        Hello my name is Kimberly. I am so sorry to hear that you had such a hard time with your diagnosis and then what’s new doctors trying to pull the diagnosis and retest for everything. I can only imagine what you’re going through. I was active duty Air Force station in South Carolina and had started to get sick. I went to two different rheumatologist in Charleston South Carolina one at MUSC one at a private practice both were unable to help then I started seeing a Rheumatologist in Columbia South Carolina who was also unable to help. I was sent to the Mayo Clinic and was impatient for 4 months where I finally got lupus diagnosis based off criteria rather than just laboratories work. Being that I lived in South Carolina traveling to Jacksonville for medical care was not feasible. I was recommended to a Rheumatologist in Myrtle Beach named Dr Jon Mitch twining. He has been a godsend. I don’t know where I would be today without him. I noticed that you were also in South Carolina. If you are unhappy with your doctor and don’t mind the travel I highly, highly, recommend dr. Twining he is wonderful, caring, compassionate, and will listen to all of your concerns. He will only put you on a path that will make you better and not worse. If you have any questions feel free to contact me. And I hope that you feel better soon camp

  • Kadi

    I have a couple of issues with his statements. I was dx’d with lupus while a patient in Loma Linda University Hospital at the age of 14. At the time my parents were told I would most likely die by age 24. The years between 18-21 were hard. Among more minor things I lost a kidney, developed severe IBS and had mono for 6 months. The latter everyone assumed was my dying. Didn’t. I am now 62 1/2. I also have always had flip-flopping ANA tests – sometimes positive sometimes negative. Odd thing about that is when I feel I am in a lupus flare is when it comes back negative!

    • Katmandu

      Thank you!! They clearly don’t fully understand the disease and leave some of us to suffer just because of a test…that they don’t fully understand!

  • Katrina Connor Bond

    Just saw a rheumatologist yesterday that totally dismissed my ANA positive test. I’ve been doing pretty good the last week or so, so I’m not sure whether to bother finding another doc right now or not. I was fatigued for two months straight and have been on and off for years. The aches just started about the time the extreme fatigue did. Just not sure what to do. The doctor gave me 12 steroid pills, took some blood and told me to exercise in a pool. Any suggestions?

    • Katmandu

      Check out the Lupus and Me page on fb. It’s great for these kinds of questions.

  • Linda

    I was diagnosis with lupus, rheumatoid arthritis, and then ulcerative colitis. I worked up to 4 years ago with multiple surgeries, chronic histoplasmosis, colon resection so that I now cant take NSAIDS. I wish the people I worked for understood what I was going through. I was a nurse working 12 hour shifts in a busy ER. I was sicker than most of the patients I saw. I had a break up of a 12 year relationship, moved a son a 1000 miles away to work and began taking responcibility of a 80 yr old father. The stress is so bad sometimes I cry and cant sleep. My memory has been coming and going and I hurt all the time. The only time I find relief is when visiting friends. It takes my mind off my problems and helps relieve the discomfort that is always there and gets worse with flares. I am so thankful for the few friends that I have that stand by me.

    • jacque

      Linda, are you still on here?

  • michelle

    The issues with the positive and negative ANA tests is something that needs to be talked about. I feel that many of us with Lupus have had this problem. Many doctors are too quick to give this one test and place all their eggs in that basket. This is dangerous to the patients, leaving many undiagnosed or delaying diagnosis for years. I am not a doctor, however I have spoken with them. ANA test (like many other lab tests) can be done by different methods. Some of these methods tend to be more accurate or maybe more sensitive that others. A negative ANA test should be repeated by all methods to be sure it is really negative. Also, ANA tests are not exclusive to Lupus only. They are used to test for other autoimmune disorders as well. These are just not things we are told when we go to a doctor. Unfortunately we have to be our own educators and our own self advocates. It happened to me. It made my doctor mad when another physician told me to ask to have certain tests done by certain methods. He had already done a test and was really furious. Well, guess what…the test came back VERY positive as did some other tests as well. At the same time I had a skin biopsy done my a dermatologist for a little sore/rash that wouldn’t heal. It came back Lupus. I took those lab results to my rheumatologists and he then relented and did the other tests. All of which were positive for Lupus and Sjogren’s. I also have Reynaud’s. Keep in mind this did not happen over night this too almost 7 years of going to doctor after doctor and leaving in tears every time being told there was nothing wrong with me, or completely being dismissed all together. The thing to remember is we live in our bodies everyday! We know when something isn’t right. Keep fighting for yourself. Go to everyone you can. Research, ask questions even if they get mad…so what! You have the right. They can get glad in the same pants they got mad in!!!! :) Best wishes to all. <3

    • anna

      What other tests did you have done that showed you had lupus? I am almost sure that is what I have, I have all the symptoms of lupus, but ana is not showing that so it is said no. thanks anna

      • Cori Smith

        There are criteria test that can be done. I just had mine by the fifth doctor that gets lupus! He can tell by the comolelation of several different test! He also said ANA is a fissmisdive test that generally doesn’t tell us shit….his words not mine…after 5 years of chronic pain and fatigue I finally got my answer…

    • Rachel Roebuck-Howard

      I totally admire you, and yes we all need to remain determined, stay educated, speak out, eat healthy and exercise often.

    • Kasey Waller

      Yeah if a doctor ever tells you that you can’t have Lupus because you had a negative ANA test it’s time to see a different doctor lol. I have had SLE for almost seven years now and while most of the time my ANA tests come back positive sometimes they are negative too and actually its usually when I am having a bad flare that it comes back negative lol so you can’t base Lupus on an ANA test alone : )

      • Nita

        I strongly believe that I have lupus, but my ana came back negative, the other antibody tests were negative too, but I have every physical symptom of lupus that I can’t imagine what else it could be.

  • private

    5 yr survival rate? Ya mean I only 5 more yrs?

  • Rachel Roebuck-Howard

    I disagree greatly with telling Lupus patients that they have a five year survival rate. I was diagnosed in 2000 and I have had several mild flares and three very serious flares and I am still fighting this demon. When people feel they have that short of time left in life they give up and give in to this dreaded disorder. Please give people a more positive prospect and let them know that with good nutrition and the will to actively take responsibility for their condition meaning exercise as much as they can when they can, abstain from overdoing anything like alcohol, smoking, eating at restaurants and fast food places, they can live long productive lives as if they had no chronic condition at all.

    • Megan

      I absolutely agree. I was diagnosed with SLE 7 years ago. What is up with the five year survival timeframe? Must have been a typo!

    • Maria

      I so agree i know people that. Have lived 30 + years with lupus im waiting to fined out if im 1 of them 1 that have lupus but ive always know people can live for year with lupus thank god

    • Paloma

      The “five year survival rate” means that the stated percentage of patients lives for at least five years, not that they die after five years. This should have been started more clearly in the article.

  • AAF

    Re: Post below

    The article did NOT say we have a five year survival rate. Apparently MANY many years ago that may have been the Case. The article points out that the survival rates TODAY are very very GOOD! 95% survival rate today! And new meds are very helpful. Good tx and good self care are imperative!

    • Private

      it says ‘today, 95% have a 5 year survival rate, compared to 5% years ago.

  • Charmane Gonzalez

    I educated my allergy specialist at Cleveland clinic about Lupus. We’d always have an argument when I had a severe allergy, I’d request prednisone as it was the only medicine that calmed the allergy down and kept it from becoming full blown pneumonia (did not know I had Lupus yet) and he’d want to try latest and greatest. Once dx with Lupus I went to him and spent my hour with him telling him about Lupus and how if he’d taken the time to draw blood and study WHY I was sick so often, he’d have found Lupus.

    • megan

      Watch out for off and on prednisone use. It can put your adrenal glands to “sleep”. Which is an absolute mess afterwards.

      • Charmane Gonzalez

        Do you have a doctors degree to make such a statement? Do you have documentation validating your very broad comment? I personally believe your statement is Bullsit!

        Your body can stop producing Cortisol if Steroids are used for prolonged periods… Please don’t make such broad statements without validation.

        • Hope

          Charmane, A doctor had given me too many steroids in a short amount of time in which I then developed cushings syndrome. as a result, I have to go in once a year to have my adrenal function tested. the endocrinologist that I see states that you may not see adrenal function issues for years. So, it appears that Megan’s statement may be true. It is at least, true for my situation. Take real good care.

          • Charmane Gonzalez

            I’m disputing the on again-off again statement. Granted TOO much can hurt, but having your doctor put you on a high dosage and slow taper actually helps lupus patients.

  • Fran Smith

    Perhaps the 5 yr survival was a misprint, my youngest sister had SLE and Discoid with multiple secondary syndromes and more. She was diagnosed at age 15 and lived to see her 51st birthday. She was truly amazing!!

  • allyxx

    I have lupus and i hate it but i love living my life and finding my way around an i am 12 years old

  • Sheri Fehr

    All I can say about this doctor Howard is I would not waste my time since he says you only have 5 years or money seeing him. He needs to read up on sle lupus patients. I’m still here. Its been 11-12 years or maybe I’m dead

  • Mark

    What’s the deal with everyone complaining over the 5 year survival rate?? This does not say you will only live 5 years! It simply shows that surviving AT LEAST 5 years is almost a certainty… Gosh stupid people!

    • Rachel Roebuck-Howard

      Stupid is as stupid does. If you don’t have lupus why are you even commenting?

  • Amy Branham

    I have had lupus symptoms for years and had an ANA test a month ago that was positive. I was sent to a rheumatologist and I wasn’t having symptoms at the time and he ordered the AVISE sle test. The nurse called me and said I was negative for any autoimmune disease according to my labs…. My question is, could that be because I wasn’t having any symptoms at the time? I was when I had my first ANA. They cancelled my follow up appointment because of the labs. I’m really frustrated because no one is looking at my symptoms!!!!

  • Libby

    I was diagosed with Lupus 6 years ago but apparently had it for over 15 years prior to 2009. I was diagnosed with Graves disease in 2000. Early years presented me with IBS, migraines, kidney stones, bad veins, and other minor infections. I am currently and have had to battle with bronchitis and pneumonia since I was 3. I had a major flair up this past June which ran into July and august. They had to put me on prednisone 3 times and now the diagnosed me with type 2 diabetes. No one understands Lupus. The pain in my muscles, the Lupus fog I get and the fatigue during the flair ups is unbearable. The last ANA test I had doctor said it was negative but was having a flare up. Very frustrating but I will continue to fight this. The statement of 5 year survival is not accurate and should be reviewed prior to posting such statement.

  • Susan Kurzen

    I agree with Rachel Roebuck-Howard. I was diagnosed with Lupus at age 27. I had severe Lupus for 10-13 years and after the worst flare I ever had, with several organs involved( I almost died that time), I went into remission a year later in 1986, and I just turned 70. So keep your chin up and don’t think life is over. I have been symptomless for all these years, about 39-40 now. Pray and seek your heavenly Father, walk and talk with Him and He will see you through. I am sun-sensitive still, so I behave myself and don’t go to the beach. That’s what I did before my last and worst flare. I didn’t know if I was sun-sensitive then and tested it, and paid dearly, so be careful with that. It was a hard thing for me to give up, but it isn’t worth risking playing with. I don’t worry about being in the sun for very short periods like walking from the parking lot to a store, but I will get an instant headache if for much longer than that. I lived in Tampa, Fla. during my worst years…sun just too strong there and it was almost impossible to stay out of it. I live in Atlanta now, which is much better. God bless you who are living with this very nasty disease. The prognosis that Dr. made of 5 yr. is rediculous for most lupus patients. Don’t go to him. Find a good doctor who will encourage and support you.