Being told your skin rashes are lupus disease is one of the most devastating diagnosis a person can receive, as there is no known cure. But there are many treatments that give relief from lupus symptoms and research is promising a better future:

Lupus Disease: Real Disease, Real Consequences

The reality is that lupus disease is sometimes fatal. Lupus symptoms can also diminish quality of life considerably, with many suffering debilitating pain and fatigue. If lupus symptoms become severe, patients are unable to work and function normally, and may experience financial hardships, strain on marriages, and many other difficult life changes. Lupus should not merely be a cross to bear, it should be (and is) something that can be controlled and beaten.

Know Lupus: Signs and Symptoms

Lupus disease is a chronic autoimmune disease where the immune system attacks normal tissue. This results in inflammation and other lupus symptoms such as:

1.- Swollen, painful, “hot” joints

2.- Extreme fatigue that lasts more than a few days

3.- Skin rashes, especially a butterfly-shaped rash across the cheeks and nose, and skin sores or lesions

4.- Mouth or nose ulcers that lasts more than two weeks

5.- Fever over 100 degrees that lasts more than a few days

6.- Chest pain upon deep inhalation

7.- Anemia symptoms

8.- Sensitivity to sun or ultraviolet light

9.- Hair loss

10.- Fingers turning white in the cold

11.- Seizures

Lupus symptoms vary a lot, depending on many factors. No one experiences all of these lupus symptoms, but a combination of them. Proper diagnosis by your physician is advised.

The three most common types of lupus disease are:

-systemic lupus erythematosus (SLE) which can affect the blood, blood vessels, skin, kidneys, lungs, joints, heart, liver and nervous system;

-cutaneous lupus erythematosus (CLE) which affects the skin only; and

-drug-induced lupus which is usually temporary, develops after taking certain prescription drugs, and eventually goes away when the drugs are stopped.

Spreading the Word: Lupus

Raising public awareness of lupus disease is of paramount importance. When someone in the public eye has lupus disease, it helps in educating the general public of all those valiant individuals whose struggles with lupus symptoms go unrecognized. It can also provide hope for those who suffer with lupus disease that a normal life can be led.

Leslie Hunt, a 24-year-old Chicago native, made it to the top 20 contestants of “American Idol” in 2007. She was diagnosed with lupus disease when she was 7. Her lupus symptoms are now in remission.

Lupus can strike at any age, to males or females, but normally affects women of childbearing age: nine out of ten people with lupus are women.

Lupus Treatment

Body, mind and spirit are each integral parts of an effective approach to dealing with lupus disease. A recent study showed that higher degrees of social support were associated with improvement in lupus disease, mainly before the patient has reached the final stages. Health is holistic; therefore, exploring the various modalities of holistic healing makes sense when one is diagnosed with lupus disease.

If you or a loved one have been diagnosed with lupus disease, or even if you’ve been dealing with the lupus symptoms for a long time, you need to learn as much as you can about this devastating illness. Carefully consider utilizing different healing methods, ideally being supervised by a natural health practitioner with solid experience in treating lupus disease alongside a qualified medical doctor. You can make positive, informed choices for your own healing, or help someone you know who is experiencing lupus symptoms to get informed.

84 thoughts on “Lupus Disease: A Devastating Diagnosis, And Many Choices

  1. Jimmy1575

    Unexplained Symptoms and no diagnosis?
    My mother is having a terrible time getting to the bottom of her medical issue. Any good solid information is welcomed.

    She states:

    I have been diagnosed with Hashimotos Thyroiditis and Low Vitamin D.
    Although my labs show that I am in the early stages of the disease and there is no evidence that I have been affected by the disease (in the form of hypothyroidism) I have all the symptoms one could imagine.

    I have had every lab test I can think of and an ultrasound that showed goiters on my thyroid. Biopsy showed no cancer.

    I have had TSH, Free T4, T3, am still waiting on results for Free T3. I have had a full range of hormone test. I cannot think of anything I have not had that might tell me something, but then, I am not the doctor.

    I have been tested for Celiac Disease, Pernicious Anemia, Lupus low calcium and everything comes out negative, everything.

    I have strange symptoms that don’t seem to fit hypothyroidism, exactly, but could fit low T3 or low Dopamine. They are: poor balance, tingling in face, lips, and hands. In addition to the typical ones for hypothyroidism. I also am experiencing rather extreme jolts as I sleep, as if I am having a seizure and strange sensations in my legs, mostly left leg.

    So far, my doctors have no explanation. My endocrinologist agreed to put me on a very low dose of thyroid replacement. My neurologist thinks I would be helped with antidepressants. I have had one MRI to rule out MS and am having another to rule out further diagnosis of MS and may have a spinal tap to rule out any odd infections of the brain. I have symptoms of Parkinson’s, or rather, low dopamine.

    So, my next Dr. visit is with a Rheumatologist. I have also seen an alternative Dr. and am awaiting test results. He said it looked like MS and also thyroid issues. He feels, like me, that we are just missing one important piece of information. We are both hoping it is the Free T3.

    Any suggestions?

    1. Zambiti

      I’ve given you a star hoping my Alternative Medicine friends will see this. This is not an area I’m familiar with, but I know some of my friends are! If you post this question in the Alternative Medicine section, you might get some relevant answers.

      Hope your mom finds the answers.

      Oh, if you post in Alt Med, add any other medications she may be on to the question. It was actually medication issues when my mom was trying to sort through her issues. Once she dropped them, she did better. She also did better removing all fluoride and triclosan (antibacterial soaps, etc) from her life. She too was suffering from thyroid related issues, but had others like blood sugar problems in the mix. The fluoride and triclosan were things she needed to remove to get to the bottom of the thyroid issues.

  2. LupusMommy

    Off most meds for Lupus?
    I was officially diagnosed in 2001 with Lupus by a rheumatologst based on a high ANA titer, joint pain, rash, hair loss and other symptoms. Now my primary care doctor is doubting my lupus diagnosis because my blood work isn’t showing signs of inflammation even though I am dealing with chostochondritis, joint pain, hair loss, photosensitivity, malar rash, extreme fatigue, depression, brain fog, myofascial pain and other symptoms. Because of my blood work, her and my rheumatologist have taken me off of plaquenil and methotrexate, are tapering my prednisone to 0 and just have me on a multitude of depression meds and celebrex and have sent me to a chiropractor. As the prednisone comes down the pain gets worse but they say since my bloodwork shows no signs of inflammation that it isn’t due to the lupus and that the prednisone is not doing anything, it is just something else. I’ve been on plaquenil since 2001 and generally my lupus has been stable except for the past 2 years. They also added MTX about 18mths ago which helped with my joint pain immensly but because I am still having other symptoms they feel the meds are not working and it is safer for me to be off of all meds. I think this is a huge mistake but have any of you been through this. I made an apt with a Lupus specialist in NYC to get a second opinion because I can’t take the pain and fatigue. Am I overeacting to this change? Has anyone been taken off all meds even though symptoms are present and are getting worse?

  3. karl j

    What r canine lupus symptoms, what is prognosis. Need to add to the Vets knowledge hopefully?
    my Boston Terrier/Shiz-tsu is at vets he is unable to locate cause of flucuating fever, some drooling, lack of appetite.White blood cell count at the bottom of the scale. All other tests (kidneys, Liver) coming back normal. Was being treated to some infection in esophogus being given anti-biotics. Would like to offer vet an alternative diagnosis

    1. Pam

      Systemic Lupus Erythematosus(SLE): is one of several diseases known as “the great imitators” because its symptoms vary so widely it often mimics or is mistaken for other illnesses, and because the symptoms come and go unpredictably. Diagnosis can be elusive, with patients sometimes suffering unexplained symptoms and untreated SLE for years. Common initial and chronic complaints are fever, malaise, joint pains, myalgias and fatigue.

      Discoid Lupus symptoms: normally starts as loss of pigment around the nose. There may be scabby sores or just scaling of the nasal tissue. The surface of the nose may change from its typical cobblestoned appearance to a smooth surface.

  4. Lauren

    Diagnosis of lupus?
    Please do not give me information that you got from google. I know what lupus is. I know what the symptoms are. I am going to the doctor soon. I’d prefer that you answer only if you have lupus or you are a health care professional.

    How is lupus accurately diagnosed? Should I see a rheumatologist to ensure an accurate diagnosis? Does it sound like I may have lupus?

    I’m a white 17 yo female. I’ve been having moderate to severe knee pain and sporadic episodes of breathing problems, pleuritic chest pain, and random joint pain esp. in the hands, wrist and hips for many years.

    7 years ago I was diagnosed with lupus with a blood test (not sure what type). Saw a different doc who gave me another blood test (think it was a CBC) and she told me I did not have lupus. Around the same time I was diagnosed with recreational asthma.
    I was diagnosed with osgood-schlatters about a year ago. I think this definitely played a role in my knee pain, but I think something else is causing it too. Children usually only have pain from osgoods for a couple of months and I’ve had pain for well over 7 years. Also, osgood’s pain very, VERY rarely continues after the growth plates of the bone are close, but I recently had X-rays done on my knees after a car accident and they showed that my growth plates are already closed, yet I’m still experiencing frequent bouts of pain.

    1. njdocisin

      Well diagnosing lupus can be tough. Most of the time the diagnosis is based on physical and historical findings (your symptoms, lab values, etc.)
      A CBC can determine whether anemia, a low white count, or a low platelet count, which are common with lupus, are present. There are 11 diagnostic criteria which are used to determine whether somebody is likely to have lupus. If you have at least 4 of the 11, there is a strong chance that you have lupus:
      1)A face rash that is butterfly shaped and covers the bridge of the nose and spreads across the cheeks
      2)A scaly rash that looks like raised, scaly patches
      3)A sun-related rash that appears after exposure to sunlight
      4)Mouth sores, which are usually painless
      5)Joint pain and swelling that occurs in two or more joints
      6)Swelling of the linings around the lungs or the heart
      7)Kidney disease
      8)A neurological disorder, such as seizures or psychosis
      9)Low blood counts, such as low red blood count, low platelet count, or a low white cell count
      10)Positive anti-nuclear antibody tests, which indicate that you may have an autoimmune disease
      11)Other positive blood tests that may indicate an autoimmune disease

      There are a number of blood tests that can be done to determine wheter you have lupus, but none of them are 100% sensitive. The most sensitive is called the Anti-Nuclear Antibody test (ANA). A positive result generally suggets lupus, especially if your symptoms are highly suggestive of lupus.
      There are some other common antibody tests that can be used:
      Anti-ribosomal P

      Other blood tests that may be useful are tests that look for general inflammation in the body, like your Sedimentation Rate and/or CRP, both of which may be elevated.
      Your C3 and C4 levels may be checked, too. They’re usually decreased in patients with lupus.
      Based on your symptoms and lab results your doctors may also want to do some imaging tests.

  5. Von Verde

    House, m.d. most common symptoms/procedures?
    So me and my family are really into House, m.d., and I’m making something similar to bingo except the bingo part is replaced with House and the numbers are replaced with House’s most common procedures and symptoms, like lupus, lumbar puncture, intubate, and so on. Can anyone give me a list of some of the most common diagnosis, symptoms, procedures, etc., or just name a few? Thanks.

  6. Michelle B

    Do I really need a final diagnosis for lupus?
    Im so sick of going to a 1000 different dr’s. Is a diagnosis really that important, or can i just continue to take all the freekin meds they have me on… I think the stress of all if this is makin me feel more crapy. Since there is no cure and nothin they can really do about it can’t I just Ignore it and deal with the symptoms when they come. Oh why all the meds? doesn’t that make it harder on my kidneys and liver?

    1. GI

      Yes Michelle unfortunately you do. The reason being is the treatment for lupus is so specific to that disorder. Autoimmune disorders are often hard to diagnose because the symptoms tend to mimic each other. All the meds are to keep your immune system from seeing your organs as the “enemy” . Hopefully in time you will go into remission and be able to taper of the meds. Good luck .

  7. Danielle

    Lupus diagnosis question?
    what were your symptoms when you were diagnosed with lupus. im due to see the specialist for diagnosis next month. my symtoms are Ana +, RA factor +, malar rash, joint pain in my fingers. does this sound like lupus?
    Im not sure how high my ANA was but I did have xrays on my hands done which showed no bone damage…my hands are just very swollen and stiff, which is why the dr thinks lupus.

  8. marpad2004

    I have lupus. Is lupus heriditery, and should i have my children checked?
    I’ve been diagnosed with SLE lupus since february of 2003. Prior my diagnosis. I was told all my symptoms were in my head and was told i was a nut case. I also have endometriosis. I have a daughter who is starting now the same path with her health as I have with mine. I concerned she my have lupus. I would like to know what her chances are, if any, if she test positive.

    1. Dr. Ima G. Neus

      My sister is a carrier but does not exhibit any of the symptoms. She found out when she went through in-vitro pregnancy. She had to have the boys tested after they were born.

  9. sante

    Was I misdiagnose? lupus or weak immune system?
    8 months ago while I was pregnant, I was diagnose with lupus. But the only symptoms that I am experiencing is joints pain and fatique some times. My doctor said that all of my organs are fine, I do not have a butterfly face neither skin problem. I wonder if the diagnosis was wrong.

    Does a weak immune system can cause thoses symptoms? I refuse to go on hormones treatments and trying to work on strenghtening my immune system first and hopefully reverse the condition.

    your experience and advise are welcome

    1. reifguy

      lupus is many stages ,and there is discoid and systemic lupus ,the immune system isnt weak in lupus its reacting in a way damaging the body and causing problems and inflammations ,if your diagnosis wasnt correct or u doubt it ,get a second opinion from a rheumatologist ,diagnosing lupus isnt easy in early stages and once diagnosed many go through remissions and relapse ,

  10. Lucy This or That

    Can someone please diagnose my symptoms? Lupus possibly?
    I have developed a rash on my stomach that has began to spread up to my upper arm. I first developed this rash when I was twelve. I didn’t think much of it, but now since it has began to spread it has become a concern. It is flaky and very itchy. Even after I apply lotion it is still very itchty. They are brown-ish circles. It has just recently began to increase in itchiness.
    In the past month I have felt very sick. I have never in my life fainted, but I came very close two times. I began to black out and become dizzy. I almost completley passed out I was sweating profusely and then I sat down and I was fine. I had no anxiety..I was fine all day and I had eaten..I made sure of it. My eating habits are very healthy. My knees were not locked. I have no idea what brought this spell on.
    Also, I have been feeling a litte depressed, more than usual, recently as well.
    I have been running a fever on and off all month..and just feeling sick as well.
    I never get sick. I have also been expericing more headaches. Lupus crossed my mind, but I am unsure if I am just jumping to conclusions…also diabetes crossed my mind, that runs in my family.
    I was unsure what category to put this in…
    Anyways, I was just hoping for a diagnosis and what steps I should take to get rid of my symptoms..
    Thank you so much…

  11. amber_91w

    I have a lot of sypmtoms of Lupus…does anyone know how or who to go to for diagnosis and treatment?
    I don’t know what doc specializes in this disorder….I’m not sure where to start or who to turn to….I just know that I have almost everyone of the symptoms…anyone have any advise?

    1. Time Bandit

      A rheumatologist, or arthritis specialist would be best for you. Lupus is related to RA, a form of arthritis where your body is destroying itself. You must seek treatment for this, the sooner the better.

  12. Anonymous

    Could all these symptoms have one root cause?
    Could these symptoms/diagnosis be all related?
    40 year old female, smoker (shame)
    Kidney stones 2 yrs ago
    Pre-cancerous Breast Calcifications current and 1 year ago
    Raynauds Syndrome diagnosed last month (had for years though)
    Multiple Miscarriages
    Tested for Lupus last year=negative
    Sore bones, especially arms & legs.
    Currently taking Norvasc for Raynauds & Celexa for anxiety/depression. (Past 30 days)

    I will be back at the doctors in a week or so & will ask him, but I can’t help but wonder if all of these thing weren’t inter-related or if there wasn’t a common thread through all of them.

    Any ideas or experiences?

    My apologies, last year, as well as about 10 years ago and twenty years ago…I was tested for thyroid disease because of another strange symptom (breast sporadically secreting clear and/or white fluid)…each test has come back normal.

  13. bill b

    Is it common to gain substantial weight if you have lupus (ELS)?
    I have a preliminary diagnosis of lupus (ELS) and I am wondering if it causes weight gain as one of the side effects? I am aware of most of the symptoms but unsure about the weight gain.

    1. LuckyLady

      Lupus is one of the strangest things in the world. The medical literature says wt. loss is common – especially BEFORE the steroids. But there as many different symptoms of SLE as there are people who have it. It affects no two people in identical ways. If you are not doing anything external to cause the weight gain, it could be the SLE. Lupus can screw up any of your functions, including pituitary function or thyroid – which could affect weight.

      Let me give you this insight, just in case you do have to go on steroids: They make it difficult to lose weight. they make you look like you’ve gotten fat, but it might just be the swelling that goes along with high dose. Keep eating a healthy balanced diet, within your restrictions, and when the dosage goes down, so will the swelling.

      At first, I would go ahead and eat whatever – like “it didn’t matter, I’m fat anyway”, then later would have to lose the extra wt. Over the years I have learned to keep doing the right thing and let the side effects come and go. My wt has stabilized now.

      Good Luck – I really mean it.

  14. Grace J

    Can Lupus really be diagnosed with “a simple blood test”?
    I’m having some symptoms that made me concerned that I have Lupus
    (after some internet research) After telling the Dr. of my concerns he
    stated that its a simple blood test. Now I’m wondering if he is just appeasing me as I thought it was a complicated process to get a diagnosis.

  15. Aecutie8504

    Lupus questions?
    For the past five or six years i’ve constantly been sick and fatigued. Its been to an all time high lately so i started to look farther into it since my doctor was saying it was always the flu or a cold. I see a new doctor tomorrow. My research has pointed me in the direction of lupus, which i was tested for when iwas 14…about 8 years ago. I had several symptoms and no positive blood work. In fact, I had all but two symptoms. Does the disorder have to come up on bloodwork in order for a lupus diagnosis to occur? There are 17 symptoms on the list i’m looking at and i have 15 of them. Yet, idk if my blood work is going to show anything….anyway can i still be diagnosed and treated with out the blood work coming back with lupus?

    1. Letitia C

      No, you do not have to have what is called a Positive ANA
      (anti-nuclear antibody) test. and still be diagnosed with lupus,
      but will probably be Discoid Lupus, wich is where your aimune system has turn on your tissue’s, mostly skin,and usually will affect face, neck, and head, flares will occur to exposure to direct sunlight or any type of fleourensent, UV rays, which will usually cause, lesions, rashes, and what is called the butterfly rash, across the brigde of the nose and can be very painful, like burns,,,, try googleing lupus,,, hope I helped, u did’t reallly tell me your symptoms,,,so I was just letting you know what happen to me, I have had severe discoid for 10yrs, and as just diagnosed a yr ago with SLE.
      this is the one that scares me a little,,,,good luck to you…Tish

  16. Debra L

    My doctor said I had symptoms of lupus and gave me prednisone and plaquinal but lab tests came back negative.?
    Could I still have lupus or was the diagnosis wrong. She is saying I should stay on the drugs because a positive ana might come back later. I am confused.

    1. ★☆W.a.b.b.y✿❀

      Is this your GP who prescribed this medication or a rheumatologist?

      If it’s your GP, I would STRONGLY recommend getting a second opinion, in fact, I would insist you do so.

      Lupus is a rare autoimmune disease. It’s much more rare than people think. And I think your doctor is being over cautious.

      These medications can have some serious side effects. Plaquenil is a medication that can cause damage to your eyes and cause permanent, irreversible vision problems. Prednisone has many more serious side effects like Cushing’s syndrome, truncal weight gain, osteoporosis, glaucoma and cataracts, type II diabetes mellitus, and depression upon dose reduction or cessation. It is a very dangerous drug and if you don’t need to be on it, you most definitely should not be.

      Although blood tests are not necessarily required, you would have to have overwhelming evidence to suggest Lupus without it. Have you had a bone scan? Urine test? How are your kidneys? Do you have a malar rash? Have you had a punch biopsy of any rashes? Do you have mouth or nose ulcers? Arthritis? Pleurisy? A blood disorder? Seizures? Did you have an ENA panel done or just an ANA? You’d need to have a majority of those symptoms without any other explanation for a diagnosis of Lupus.

      If you’re on Prednisone, do not stop it suddenly. It can cause problems with your adrenal glands if you stop it without tapering.

      Please see another doctor, these are not medications that someone should be on if they don’t need to be. Lupus mimics so many other conditions and many of them have treatment plans that are completely different to one you’re currently on. Your situation really concerns me (and I don’t say that often!). PLEASE see another doctor ASAP.


    1. mlk_maid

      Lupus attacks your organs. Usually a butterfly rash across the nose and cheeks is a common first sign. There are treatments for arthritic that help with inflammation, also chemotherapy in small doses (pill form) help slow it down. I don’t believe there is a specific test to diagnose it. It is usually diagnosed on symptoms. Prognosis depends on the severity of it. A lot of people live a normal life with it.

  17. Elise

    How accurate is the diagnosis of Lupus from the results of a skin biopsy?
    I developed a rash three weeks ago. It began as one scabbed-over little hole in my thigh. Then it spread all over my stomach, eventually to my arms, and neck. They start as little red hard bumps, then kind of look like a pimple, but you cant pop it, then they become little indents of scabs in my skin for weeks. I have been extermely emotional lately, crying very easily and generally feeling depressed. I have also skipped my a few periods (and Im sure Im not pregnant) The doctor performed a skin biopsy on one of the bumps. He mentioned he was looking for excema, but i don’t know if that has anything to do with the type of skin biopsy or test he ordered. The results came back as lupus, however i don’t have the butterfly rash or joint pain that are symptoms of lupus. My skin rash symptoms are not sun related, since the rash began in areas of my body that never see the sun. I also dont have a family history of lupus. How accurate are the results of a skin biopsy? Could this be lyme disease?

  18. InCalifornia


    I wanted to add that she has been checked for neurological disorders and she doesn’t fit in that category, as well as Rheumatoid Arthritis… A few doctors agree that she has a rotated (anteriorly) pelvis and it could be the main reason for all of her problems, tight psoas muscles, etc…. I haven’t been able to find a doctor that truly knows how to manipulate the pelvis back into place, if that is the problem….

  19. complicatedtallblonde

    Can anyone please help me with these symptoms? (very similar to lupus)?
    rash under eyes, on arm, and on cheek (will go away with high dose steroids but always comes back right after) I have had the rash since early to mid december

    headaches (daily)

    always tired or lagging

    sore muscles and joints

    light nausea (sometimes)

    past diagnosis of anemia

    irregular periods since I was 16

    unreasonably cold hands and feet

    can never get comfortable, always too hot or too cold

    bowel problems including
    severe constipation
    blood with bowel movement
    up to 6 days with no bowel movements
    oct 31st 2009 small bowel obstruction

    weight fluxuation

    trouble concentration (brain fog)

    protein in urine and bacteria in urine

    light stomach pain (now and then)

    My mother has fibromyalgia and reinods phenomina

    I just got a lupus panal blood test back and they are negative.. where do I go now? whats next?

    1. mgunnycappo

      Your doctor isn’t curious about the protein in the urine? How much is your creatine clearance? This is an indicator of Lupus Nephritis (when Lupus attacks the kidneys). Many people with Lupus test negative for all of the blood work but still have Lupus. If you have kidney the protein in your urine, then you’ll need a kidney biopsy to check for Lupus. You have many of the symptoms of Lupus. What does your doctor think. They obviously know that Lupus can only be ruled IN with blood work not ruled OUT.

  20. Nora

    Lupus, mono, or respiratory infection?
    My symptoms:
    Bad chronic cough with mild pain
    Fever (101) now reduced to 98
    Stuffed up nose
    Scratchy throat
    Shoulder, back, and upper stomach aches and pains
    Mild mental disorientation

    I take delsym for my cough but it hasent really helped.
    For lupus diagnosis, I am a 13 year old caucasian male

    I also noticed small lumps on the side of my neck. They are squishy like a vein. Could it be a swolen lymph node?

  21. Kismet

    please help..lupus diagnosis? name of drug?
    so i had a blood test and my rh factor came back high, my white blood cell count slightly low, my esr westergren was high, and my anti-nuclear ab eia was was positive. i have no difinitive symptoms of any kind except for fatigue. the rheumatologist is re-testing my blood and said that if it comes back positive that he was going to put me on a drug to prevent the onset of symptoms and disease. i’m not quite sure what he said it was but it started with a p i believe and sounded like patorsil or patoxcil. maybe someone knows with the test info i’ve given. does anyone know what the drug is supposed to do and what diseases it’s linked to? thanks a lot..

    1. DionnaC

      Heyy .. I have lupus myself and I am not familiar with the blood tests you have mentioned but I believe that the drug you are talking about is plaquenil. It helps to prevent damage to tissues in the joints. It is very safe to take and there are rarely any side effects. But you will need to have your eyes checked every 6 months.

      It is useful in treating several forms of malaria as well as rheumatic diseases, such as lupus and rheumatoid arthritis.

      Any other questions? Feel free to ask!

  22. Anonymous

    Could these symptoms/diagnosis be all related?
    40 year old female, smoker (shame)
    Kidney stones 2 yrs ago
    Pre-cancerous Breast Calcifications current and 1 year ago
    Raynauds Syndrome diagnosed last month (had for years though)
    Multiple Miscarriages
    Tested for Lupus last year=negative
    Sore bones, especially arms & legs.
    Currently taking Norvasc for Raynauds & Celexa for anxiety/depression. (Past 30 days)

    I will be back at the doctors in a week or so & will ask him, but I can’t help but wonder if all of these thing weren’t inter-related or if there wasn’t a common thread through all of them.

    Any ideas or experiences?

    Thank You!
    My apologies, last year, as well as about 10 years ago and twenty years ago…I was tested for thyroid disease because of another strange symptom (breast sporadically secreting clear and/or white fluid)…each test has come back normal.

  23. Chloe B.

    Lupus diagnosis/testing?
    In September I had a routine blood test that showed a “possible indication” of lupus – a huge and shocking surprise. My GP said repeatedly not to worry, that lupus is hard to diagnose for a number of reasons. He gave me the name of a rheumatologist, for more advanced blood work, but also recommended that I work on losing weight and getting my pre-diabetic blood sugar down, then being re-tested in the original fashion after three months, to see if this and a few other things that had shown up “cleared up on their own” as a result. Three months later, I am wondering if it is just as well to go ahead and see the rheumatologist for the more advanced blood test. The only thing is, I have absolutely no symptoms of lupus at this time, and in my entire life, have only had two! When I read about the condition, I just don’t see how I could have it, but at the same time, I understand people can be asymptomatic for years, even decades. I’m puzzled and wonder how concerned I should be.

    1. mistressspoiled2003

      I had lupus for 17 years went untreated symptoms can be masked by other things in your life. Went through so many years of problems talked to the Rheumatologists . 2hrs and they told me what was wrong. It is something you will have to get used to. but if you have it dont worry. I am a survivor I went untreated for 17 years, you shall survive. Dont listen to all the horror stories people tell you go to the Lupus website, your Rheumatologist will become your best friend

  24. blah blah blah

    I have Lupus. My Doctor diagnosed me w/ fibromyalgia ALSO. WHY?
    I have had SLE (lupus) for 1 year now and have been treated with cellcept and prednisone.
    At my last Dr. appt., my doctor diagnosed me with fibromyalgia.
    She did no tests or anything. How does she know?
    I played football for 6 years(many injuries)–I know i have a high pain tolerance.
    ****She said that because my joints were not swollen, I must be amplifying the pain!!***–(amplified pain is the definition of fibromyalgia-you interpret pain as being worse than a normal person)

    I am really angry that my doctor would tell me that I’m just complaining–she’s always telling me to tell her all my symptoms.


    1. Linda R

      Fibromyalgia often occurs in overlap with lupus. They are both autoimmune. Fibro is usually diagnosed by having pain on symmetrical pressure points in the body.

      If you want to know how you doctor knows, ask the doctor. We don’t know what your doctor was thinking or how the diagnosis was made.

      If you don’t trust your doctor, get one you can trust. Lupus is too serious to be treated by a doctor with whom you do not have an open and honest relationship.

      We dont’ know if she was right because we don’t know your symptoms and we don’t know what information she used to make that diagnosis.

  25. dpascoe8692

    I have had a positive ANA and have many symptoms of Lupus?
    I have been diagnosed with Fibromyalgia for 10 years, but from alot of research on the net I feel it has been Lupus not Fibro I suffer from. I have mouth and nose lesions, Asthma (breathing problems) after no problems for 25 years, big time fatigue, and several forms of Arthritis and joint pain. I can not stay out in the sun, last 3 years I get sick and rash, depression. Are their people out there that are simular to me that FINALLY got the correct diagnosis.

    1. hello

      Well, your situation sounds alot like mine. It took many years to get the diagnosis of Lupus and APS for me. Many years of rashes, pain, fatigue, positive ANAs, leisions…you name it. They told me fibro before this (even though I didn’t have remotely enough of the trigger points) and even depression. Ha – if they only knew it was all Lupus and APS.

      What helped me is I started taking pictures of my rashes and skin color changes. You could plainly see Livedo and my malar rashes…but together with my clotting history and blood work…well they finally started taking notice.

      Keep pushing and see another rheumatologist if you need it. Good Luck!

  26. joey

    Recent Lupus diagnosis?
    Wondering if anyone has recently had a Lupus diagnosis and how it finally happened. I have the symptoms, the family and personal history of autoimmune disorders, but my Doctor is treating me like a hypochondriac. Any suggestions?

    1. PreviouslyChap

      It’s time to get a new doctor. One that believes in you and that you feel comfortable with. You are the consumer. If you are worried, he should run all the basic lab work, etc.. Also, there are specialty docs out there.. Rheumatologists for example… they deal with joint problems and pain alot. Find someone you are truely comfortable with and work through each diagnosis with them.

  27. Aleyce

    Is it possible to have lupus and not have the butterfly rash?
    Also, my doctor said he thinks my problems could by autoimmune like lupus because I show so many symptoms that match that and only predisone helps my symptoms, but my autoimmune test came back good, does anyone have any suggestions on what avenues to take to figure this out and how to get a diagnosis?

    1. Linda R

      There are four different types of lupus: one that affects skin, one that affects the body, one that happens to newborns, one that is caused by certain medications. Not everyong get the rash. I never had the rash but the lupus affected my organs.

      5% of people with systemic lupus (that affects the body) will have a negative anti-nuclear antibody test. This is documented in the medical text book “Systemic Lupus Erythematosus” by Dubois, and in “The Lupus Book” by Daniel Wallace MD.

      Lupus is difficult to diagnose because there is no specific test. You need to see a rheumatologist. Most general doctors do not have the training to make an accurate diagnosis.

  28. MyKidsMom

    Juvenile Rhumatoid Arthritis possibly Lupus – Possible diagnosis for my 15 year old?
    One night my son woke me up in the middle of the night that his knee was swollen. The next day, we noticed that it had water/fluid on/in it. In talking to him, he has had no accidents nothing that he can remember to have hurt his knee. Took him to an orthopod on Monday and he has us going to see a Rhumatologist and going in for MRI and blood work. He really isnt in any pain, only when he squats down or does bends his knee under pressure.

    I am not familiar with these conditions, anyone have any ideas? That is just what he could come up with why a very healthy/active 15 year old would just start having these symptoms.

  29. Melanie P

    Anyone have Lupus or know any information on it?
    I have been living with the diagnosis for 7 years. The medications seem to make me more sick? Does anyone know of any meds that actually made them feel better. Right now my symptoms are swollen, sore joints. Fatigue. Uncontrolled diarrhea. And hair loss. Anyone with experience? I am taking plaquenil, silica and prednisone but things seem to be getting worse. My C3 and C4 complements are very low. Any suggestions?

    1. sarge

      I’m sorry you are suffering with this disease. My daughter has had lupus for about 15 years. There is some exciting new study going on involving Cytoxan. Contact Drexel University School of Medicine in Philadelphia, Medical College of Wisconsin or John Hopkins Medical Center. Contact the Lupus Center at (410)614-1573 for info or email them at God bless you.

  30. Alex

    Girl I know with strange symptoms, any help on a diagnosis or at least a start?
    18 years old
    Slim body type

    Night seizures
    Unexplained bruising
    Abdominal pain
    Passing out occasionally

    She is on no medication except birth control
    Her mother has Lupus

    I just want to help her, she is scared to go to the doctor. But if she does have something serious wrong I want to be able to convince her to go.

    1. Linda R

      Your friend needs to be more afraid of what will happen if she does NOT see a doctor. Whatever she has, those symptoms are pretty serious. If left untreated, things will get worse and could even be fatal.

      She has whatever she has. Not knowing will not change that.

      Ask her what she is more afraid of, seeing the doctor or the possibility of disability or death?

  31. Jojo

    Whole host of symptoms for past year, no diagnosis…help?
    I have been having persistent pain in bones and joints, vertigo, fatigue, numbness and tingling in feet and hands, chest pain, and enlarged lymph nodes. Had chest x-ray showing linear subsegmental ateclectosis of left lower lung. Been screened for RA, lupus both negative. My MRI shows no active lesions in the brain, so not MS. Been screened for diabetes and thyroiditis as well. My TSH levels have been either really low .004, .002, or borderline high 5.6, 5.4. My eosinophils have been double normal levels. I am no longer able to run, or do strenuous workouts as the pain during is bad, and can’t walk for days after as my hips feel out of place. Please help!

  32. Melissa R

    All these symptoms and no diagnosis…help, can u give me ideas?
    I have had loose stools for almost a year, on an average 7 to 15 a day….I feel tired most of the time, I do have times when I feel energetic, but then all of the sudden I crash..My body aches like the flu, sometimes i run a low fever around 99…..I get a very upset stomach at times, and throw up once or twice a week for no reason….had a rash that covered whole body and was told it was like heat rash……after about 6 weeks it went away, now it is coming back…….it was gone for 3 months… feet hurt real bad when i have to walk on them, i have a pain in my left hip that goes into my leg……I have gained alot of weight over 20lbs in the last year….
    I am not pregnant, have had blood work, testedd for lupus, lymes….thought it was CFS at first, but all the loose stools….not IBS totally……..any ideas? I just took in some stool samples and did more blood work…….my iron is good…….

    thanks……I am a 36 year old female, I do not drink or do drugs…

    1. Singinganddancing

      Celiac disease? A/k/a gluten intolerence.

      Advice: if it’s in any way possible, ask for a blood test BEFORE you go off gluten. Once you go off, the blood test won’t be positive unless you go back on for a longish period of time, and it will likely make you too sick to do that.

      Google celiac disease. Many of your symptoms sound like it. It has a lot of weird symptoms and isn’t the same for everyone. If it sounds possible, make an appt w/ your doctor right away.

  33. Laurel

    Symptoms for 7 months, no diagnosis. Excessive hair loss, muscle pain, swollen nodes.?

    I`m a 19 year old female who`s been experiencing a series of symptoms for the past 7 months that doctors have been unable to diagnose.

    Firstly, my hair has been falling out and as you can imagine, this has been very emotionally stressful. Since about 7 months ago, I`ve lost more then 75% of hair from all over my head. The hair loss is not patchy, but has been thinning all over. I used to have long, extremely thick and beautiful hair, and now its almost gone. The hair loss is not localized to my head as I’ve even noticed that the hair on my legs and in my pubic area have barely been growing back after shaving. I did see a dermatologist and he said that I must have an underlying autoiumme disease that’s causing the hair loss. He suspects lupus or a related disease, but as of yet, blood tests have shown no irregularities.

    Since around the same time my hair has been falling out, Ive noticed that the lymph nodes in my neck have been swollen. Sometimes they are red and sensitive (especially after drinking alcohol or smoking) but usually they’re painless. I’ve also been experiencing a lot of joint/muscle pain and stiffness. Some days it gets really bad and I can barely move, even typing/writing is difficult because the muscles in my hands are so stiff. I feel like every muscle and joint in my body is inflamed. I’m only 19 and I’m having as hard of a time moving around as my 55 year old mother with MS.

    Lastly, (and I’m not sure if this is related at all) my skin has been really dry and especially itchy. I’m not sure if I’ve noticed any rashes, but I have noticed some redness (light red spots) randomly on my skin.

    My family doctor did a thorough blood analysis and everything came back normal. There is no sign of vitamin deficiency, my thyriod was normal, no diabetes, my blood cell count was normal, kidney/liver function was normal, and I’m clean for STD’s/STI’s. I really don’t know where to go from here and im terrified that if I don’t find out whats wrong, I’m going to go bald.

    Does anyone know what these symptoms indicate? Any advice as to what I should get tested for/where I should go from here would be great.

    Thank you in advance for the help!

    1. Moped Mama

      my endocrinolgist , said i had sluggish thyroid normal levels, my VIT D was dangerously low my vit b 12 was low i have hypo thyroid symptoms normal thyroid I HAVE goitors never knew it until i choked and had ENT do a nasal scope, so follow my advice my endocrinologist put me on synthyroid , 37.5 mcg works for me VIT D and VIt B 12 also AVOID wheat products you could be celiac syndrome try eatting oatmeal rice potatoes NO wheat pasta buy rice and corn pasta drink V* 8 splash change your diet

  34. angryman

    Help me with these blood/ANA results please? It is lupus?

    I received a pleasant call today from my doctors office saying that they got my recent blood work back and there was an ANA and then they said something about rheumatoid arthritis(RA). They said they were calling a rheumatologist to set up an appointment for me.

    In the meantime I looked up ANA and RA. When the doc’s office called again, I asked for clarification of the test results. Apparently, RA was tested for and was not present. My numbers were 1:160. The pattern is speckled.

    I have an appointment set up for a few weeks and will find out more then. In the mean time, can you help decipher these blood results.

    The symptoms that led to the blood tests involved my legs and feet feeling dead/numb in the morning when I awake. I swing them out of bed and they don’t fall out from underneath me but they hurt a little bit and don’t feel like they have joined me yet. It doesn’t take very long for them to wake up and be normal. The doc scheduled an EMG/nerve conduction. That is an insane test and I hope I never have another one, but I digress. The EMG was fine leaving the blood work to come back as the next evaluator.

    Other symptoms are harder to gauge because I take 5mg of Oxycodone for IBS. Three times a day I take it usually. It does a great job of taking away the general aches and pains of being a not-very-active 34 year old man along with helping with my abdomen. I mention this because alot of the symptoms of lupus or arthritis may being masked by the Oxycodone. I know that I have joint pains and muscular aches. I just chalked them up to getting older and my weight rising to 245lbs. That is an all-time high weight and I thought my joints and muscles were just struggling to keep up.

    Anyway, I don’t have many of the symptoms that seem to be indicative of a Lupus diagnosis. Such as:

    anemia(that I know of; surely my blood work over the last year would show that, right?)
    hair loss
    abnormal blood clotting(that I know of)
    Raynaud’s(that I know of)
    mouth or nose ulcers

    So basically,

    My legs and feet hurt when I wake up or after a long drive or after lying down for awhile like when you are watching a great movie and don’t get off of the couch for awhile).

    My hands seem to be a tad bit weak. Sometimes I really have to stretch my fingers and shake them around to wake them up also.

    My blood numbers were 1:160 with a speckled pattern. Something about ANA(antinuclear antibody).

    Any ideas? Thoughts? Honesty is appreciated. Best answer will be awarded. Thanks in advance for your help!

  35. wingsovgrace

    Have you been diagnosed with drug induced Lupus ?
    !0 years ago began having problem with elevated blood pressure. Was treated with the usually prescribed meds. Within the past ten years I have had a variety of unusual and often preplexing symptoms that the doctors couldn’t find good answers for. Lots of guesses and lots of unsuccessful treatments and increased frustration and misery until recently. The diagnosis is drug induced Lupus and it is believed to be caused by my blood pressure meds. Bingo. The symptoms have developed over the same period I’ve been on the meds. My question is: Any known effective alternatives for Blood Pressure Control? Anyone else with Lupus have bizarre skin and hair folllicle issues? Any one know a reputable doctor in Kansas City Missouri to advise on alternative treatments? Any one know of a web site to purchase alternative B/P treatments that you or someone you know have had personal experience with? Are there suggestions for a great support website for Lupus?

    1. Healing Oneself

      Hi WIngsOfGrace

      Here are some ideas to heal the issue. Also learning about detoxifying the blood by doing colon and liver cleanses will change your health forever.

      Food allergies (there is a 100 percent correlation between lupus and food allergies), rheumatoid arthritis, other connective tissue diseases, parasites, candidiasis, bowel problems, and digestive enzyme deficiencies can create symptoms that mimic or exacerbate SLE. Migraines, epilepsy, and psychoses must also be ruled out before a proper course of treatment can be decided upon.

      Both forms of lupus primarily strike young women (90% of cases) and young children.

      The drugs hydralazine, procainamide, and beta blockers can cause false-positive readings of SLE, and can also produce a lupus-like condition that disappears when the drugs are no longer taken. Birth control pills and environmental stresses can also exacerbate lupus symptoms.


      Natural Cures

      Diet: Eat an organic, whole foods diet. Also avoid overeating and limit your intake of dairy, beef products, and polyunsaturated oils. Also screen for food allergies and avoid all foods to which you are allergic or sensitive. Increase your intake of vegetables, especially green, yellow, and orange, and consume non-farm-raised fish several times a week.

      Herbs: Supplementation with Swedish bitters with each meal can increase hydrochloric acid production. Also drink an infusion of nettle twice a day. Other useful herbs include echinacea, goldenseal, licorice, pau d`arco, and red clover

      Hydrotherapy: Hydrotherapy is the application of water, ice, steam and hot and cold temperatures to maintain and restore health. Treatments include full body immersion, steam baths, saunas, sitz baths, colonic irrigation and the application of hot and/or cold compresses. Hydrotherapy is effective for treating a wide range of conditions and can easily be used in the home as part of a self-care program. Many Naturopathic Physicians, Physical Therapists and Day Spas use Hydrotherapy as part of treatment.

      Hyperthermia: Hyperthermia involves artificially creating fever in the body for the purpose of boosting immune function. Hyperthermia can be a highly effective method of eliminating toxins and heavy metals, as well as infectious bacteria and viruses that cannot survive in elevated body temperatures.

      *Purified water is essential for any hydrotherapy or hyperthermia treatment. Remedies for Treating Chlorinated Bath Water offers clear instructions and recommendations.

      Juice Therapy: Drink the juice of carrot, celery, flaxseed oil, black currant oil, and garlic.

      Nutritional Supplementation: Hydrochloric acid (HCL) deficiency is common in people with lupus, therefore HCL supplements with each meal is advised. Other useful nutrients include vitamin A with beta carotene, vitamin C and bioflavonoids, vitamin B complex, vitamin B5, vitamin B6, vitamin B12, calcium, magnesium, selenium, zinc, essential fatty acids, proteolytic enzymes taken away from meals, digestive enzymes taken with meals, and the amino acids L-cysteine, L-methionine, and L-cystine.

      Topical Treatment: PABA cream applied topically can help ease symptoms.

      Best of health to you

  36. Rebecca

    can anyone help me understand my diagnosis of possible lupus?
    I went to the doctor with back pain, thinking that I was just sleeping on a bad mattress. the did x rays and found that I have degenerative disk disease. an MRI found that everything was with in normal limits. So that didn’t explain the pain. as I began to get progressively worse, and took on new symptoms, they did a battery of tests looking for auto immune diseases, thyroid problems etc… my lupus panel came back as possible lupus. a second test came back normal. they are sending me to a rhuematologist but I cant get in to see him till oct thanks to my crappy insurance. my thyroid tests (all 3 of them)came back normal, abnormal them normal again. But they also said that they were consistently high enough to send me for a thyroid scan. that came back normal. They are sending me to an endocrinologist at the end of the month. In the mean time I was wondering if anyone could help me understand all this. I am n constant pain. sometimes I cant function. I am angry and depressed all the time. I hate not having any answers. Vicodin runs through thins house like it’s candy and I take all that I am able to get my hands on just for a small bt of Relief. I don’t want to be an addict. I don’t want to take all the pills they give me because they make me tired and sick. is there anyone out there that hs had similar experiences? Can anyone help?

  37. JennyLane

    Blood test for Lupus?
    Hi there,

    I had quite a few blood tests yesterday (9 tubes, ah!) in attempt to correlate all of my symptoms with a diagnosis. Among them, I had a Lupus (which is suspected) Panel taken, as well as an Arthritis (rheumatoid is suspected) Panel.

    My main question is, how long does it generally take to get such test results back? I’m trying to be very patient (and it’s only been 1 day, ha!), but of course after feeling so bad for so long, I just want an answer. I’m 21 and I feel like I’m 90 when I try to get out of bed in the morning!

    Also, anyone diagnosed with each condition, would you be will to give me some firsthand insight?

    Thank you very much!

    1. Sweet James Jones

      It mainly depends on the lab. They basically have to analyze your DNA and look for certain markers: systemic lupus erythematosis (anti-dsDNA/Smith antibodies) and rheumatoid arthritis(HLA’s-DR4 & B27). It’s usually b/w 1-2 weeks. When did your physician schedule your next appointment…thats usually an indicator of when he expects to have your results in.

      Check the links below for info about SLE and rheumatoid arthritis.

  38. Tal

    ?????? Lupus????
    My ANA is 1:40 and my rheumatoid factor is 6 and my ana pattern is nucleolar. c reactive protein is .32. is the diagnosis of lupus likely?

    my neurologist said it is lupus, but I have to see a rheumatologist. I went in becasue of fatigue and my entire left side is always in pain. I also have some other symptoms. Maybe I’m in denial

    1. RNsmiles

      Although Lupus can be difficult to diagnose, for a Rheumatologist most likely it will be fairly easy after drawing labs and your symptoms.
      Someone did mention that there are 11 criteria. You must have 4 criteria to make the diagnosis of Lupus.
      Some of the eleven are:
      palliative mouth sores
      malar rash
      Malar rash
      Positive ANA ( a positive ANA does not diagnose you with Lupus, so by itself does not mean anything; 10% of people can have a positive ANA and have no immune problems) also 1:40 is considered negative to a rheumatologist unless of course you have 3 other criteria.
      Labs indicate Low White Blood Cells
      + DNA, RNP, SMith Antibodies

      although not criteria, your doctor should also look at C3 and C4 which are complements associated with lupus and low levels are not a good sign. Also Protein in the urine is also indicative of kidney disease which is associated with Lupus.

      Some doctors will treat with Plaquenil if you have 3 criteria.
      Also Raynauds is another symptom that can be associated with Lupus.

      Lupus can affect Heart, Lungs, Kidneys, Central Nervous System and joints with Arthritis pain.

  39. keechee

    my mother has lupus systemic for 35yrs I have fibromyalgia any connection?
    I have been told systemic lupus arith.. can mimic other deseases like fibro..and angina and other things can fibro mimic lupus, I have very similar symptoms to lupus but no diagnosis anyone else have any of these conditions?..only serious answers please nothing funny about either..

    1. Krustyart

      Most doctors I have talked to about Lupus or FM say it’s not really an illness but is more mental than anything. I know someone who claims both ailments. She only gets sick when her husband asks her to clean the house or cook dinner or get a job. Otherwise she is fine and goes on lots of vacations and shopping trips. Some nurses refer to this as “daytime television disease” as most victims find out about it on TV and them come down with it shortly after and end up watching daytime TV religiously instead of working or housework.

  40. chloe.

    symptoms for months with no diagnosis. any ideas at all?
    for the past nine months i have had:
    – severe bouts of join pain, and possible deterioration of my joints.
    – fatigue
    – red rashes on my face an neck area
    – kidney infections and proteinuria.

    i have been tested for and do not have:
    – RA
    – lupus
    – fibromyalgia
    – lymes disease

    i’m constantly going to doctors and they can’t figure out what is going on.
    any suggestions at all on testing ideas or possible diagnosis would be greatly appreciated!!

  41. angryman

    blood/ANA results 1:160 speckled…Lupus?

    I received a pleasant call today from my doctors office saying that they got my recent blood work back and there was an ANA and then they said something about rheumatoid arthritis(RA). They said they were calling a rheumatologist to set up an appointment for me.

    In the meantime I looked up ANA and RA. When the doc’s office called again, I asked for clarification of the test results. Apparently, RA was tested for and was not present. My numbers were 1:160. The pattern is speckled.

    I have an appointment set up for a few weeks and will find out more then. In the mean time, can you help decipher these blood results.

    The symptoms that led to the blood tests involved my legs and feet feeling dead/numb in the morning when I awake. I swing them out of bed and they don’t fall out from underneath me but they hurt a little bit and don’t feel like they have joined me yet. It doesn’t take very long for them to wake up and be normal. The doc scheduled an EMG/nerve conduction. That is an insane test and I hope I never have another one, but I digress. The EMG was fine leaving the blood work to come back as the next evaluator.

    Other symptoms are harder to gauge because I take 5mg of Oxycodone for IBS. Three times a day I take it usually. It does a great job of taking away the general aches and pains of being a not-very-active 34 year old man along with helping with my abdomen. I mention this because alot of the symptoms of lupus or arthritis may being masked by the Oxycodone. I know that I have joint pains and muscular aches. I just chalked them up to getting older and my weight rising to 245lbs. That is an all-time high weight and I thought my joints and muscles were just struggling to keep up.

    Anyway, I don’t have many of the symptoms that seem to be indicative of a Lupus diagnosis. Such as:

    anemia(that I know of; surely my blood work over the last year would show that, right?)
    hair loss
    abnormal blood clotting(that I know of)
    Raynaud’s(that I know of)
    mouth or nose ulcers

    So basically,

    My legs and feet hurt when I wake up or after a long drive or after lying down for awhile like when you are watching a great movie and don’t get off of the couch for awhile).

    My hands seem to be a tad bit weak. Sometimes I really have to stretch my fingers and shake them around to wake them up also.

    My blood numbers were 1:160 with a speckled pattern. Something about ANA(antinuclear antibody).

    Any ideas? Thoughts? Honesty is appreciated. Best answer will be awarded. Thanks in advance for your help!

  42. kevin

    Do you think im having a lupus flare? i have many symptoms?
    Im a 17 yr old male and i was diagnosed with lupus about 3 years ago..since my diagnosis i haven’t really had any problems with the disease. For the past two weeks ive had severe loss of appetite, nausau, dizziness and some random joint pains. Ive only vomited two times in these last few weeks but the nausau and dizziness is really bothering me. I can’t tell if the appetite loss is what is causing the other symptoms, because i only eat occasionally because i dont feel good when i do eat. I am trying to make an appointment with my doctor now, but if anyone has any good imformation please let me know. Greatly appreciated.

    1. buniluv34

      I am so sorry to hear about your diagnoses. My wonderful sister had lupus and just passed away last year. The lupus could be attacking your stomach at any time. That could be your problem at the moment. One thing I learned over the years with my sis is that Lupus can attack any and every part of your body at any time. One week it would be attacking her legs, the next it would be in her stomach. Did you happen to watch the “View” when Snoop dog was on with his wife and daughter. His daughter has Lupus and they found a new drug that’s going to be on the market soon. (he has money that’s why he can get it for his daughter now) she had crippling in her hands and many of the severe symptoms that my sister had, she just didn’t have them until she was about 35yrs old . His daughter looks fine now and says she has no problems with her Lupus at this time(she is about 7yrs old) my sister passed at 48yrs old. If you can go on the “View” website and find that episode, Please do. The worst thing about the disease is the Prednisone they put you on. That med tore her apart piece by piece (brittle bones, etc”). Good Luck with everything and know that they are making great progress with Lupus

  43. Joe

    What criteria did the LFA have in estimating the prevalence of American Lupus?
    I’ve always wondered what criteria the Lupus Foundation of America used to create their “1.5 million people country-wide” estimate. Especially, since it seems to run contrary to almost every other major study conducted on the subject. Since Lupus is considered “the disease with a thousand faces”, wouldn’t it be particularly difficult to estimate a condition, with so many symptoms, over the phone. Fatigue, joint pains, and muscle pains are symptoms of a whole slew of medical problems. Couple that with a positive ANA (which occurs in twenty percent of the healthy population) and you’re bound to skew numbers. Whenever someone presents with symptoms even remotely suggesting Lupus, many doctors and even patients are quite quick to jump on the Lupus bandwagon. This seems to suggest a specific mind-set and medical culture surrounding the disease. Perhaps, that’s why the television show “House MD” always seems to be poking fun at the patients and medical staff who, with every other potential diagnosis, suggest Lupus. General estimates seems to be in the range of a prevalence of 300,000-500,000 people, yet the LFA has almost tripled that. Why is that?

    1. Linda R

      Most of the lower estimates are older estimates.

      The reason newer numbers are higher is because doctors are better at diagnosing lupus now. Additionally, if you developed lupus 30 years ago you could be expected to die within 5 years. Now you can expect to live a relatively normal life span. So there are more lupus patients who have been properly diagnosed and more who live longer after diagnosis.

      The LFA did an extensive phone survey, much like other phone surveys, calling a large number of people randomly and then extrapolating the data to the general population.

      Some diseases are reported to the government (CDC) including the big killers like cancer and heart disease as well as contagious diseases. There is no reporting mechanism for lupus. Some researchers have based their data on hospital discharges which can be misleading: not all lupus patients get hospitalized, the discharge may say something other than lupus, for example, pericarditis and pleurisy even though it was the lupus that caused the problem in the first place.

      The reason lupus is called the disease with a thousand faces or the great imitator is because it manifests differently from patient to patient and because the symptoms are similar to many other diseases. This is one of the reasons it is so difficult to obtain a diagnosis. On top of that there is no definitive biomarker for lupus.

      The immunofluorescent pattern seen in the ANA is more significant than having a positive ANA in the first place. 10 million Americans have a positive ANA. 5% of lupus patients will have a negative ANA. A speckled ANA is indicative of the probability of lupus, while other patterns may indicate scleroderma or Sjogrens.

      And contrary to your opinion that doctors and patients are quick to jump on the lupus bandwagon, the opposite is true. The majority of lupus patients take 3-5 years to obtain an accurate diagnosis and see as many doctors along the way.

      I would be interested to know what just half a dozen of your “every major study” sources.

      And I would really like to have a reference (other than your own perception) that “Whenever someone presents with symptoms even remotely suggesting Lupus, many doctors and even patients are quicke to jump on the lupus bandwagon.”

      Not only do I have systemic lupus with very major organ involvement that nearly killed me in 2003 and went undiagnosed for 38 YEARS, I also work with lupus patients on a daily basis.

  44. Trooper

    Lupus and Rheumatoid Arthritis?
    I had blood taken last week due to some symptoms I’ve been having (fatigue, body aches and pains, joint pain, etc). The tests came back positive for both Rheumatoid Arthritis and Lupus. My doctor seemed to be confused with the double positive results and has set me up with a Rheumatologist.

    My question is this: How accurate are the initial tests for diseases such as Rheumatoid Arthritis and Lupus? And if they are accurate, has anyone out there had this type of diagnosis?


  45. theemandee

    52 and diagnosed with Lupus but are all her symptoms caused by the lupus?
    My mom has been in and out of the hospital over the last few months and recently has been put on 24-7 watch at the hospital near me because of Lupus.

    A few days ago she felt fine.. they have her on steroids for lupus and she was doing great. Then they did surgery to remove fluid from around her heart that the steroids didn’t get.. and she’s not herself anymore. She doesn’t remember who we are and sometimes doesn’t remember where she is. It’s like talking to an 80 year old with dementia or alzheimers. It’s really, really scary to see her like this.

    Has anyone seen confusion and memory loss in Lupus? She gets over agitated very easily and thinks every noise is something significant. Her heart rate has been jumping up to 205-209 so they have her on medication to try and keep it down. Is this just because of the late diagnosis of Lupus? She only had 3 out of 4 of the criteria before and they wouldn’t treat her but now she has the criteria and is finally being treated.

    Will she come out of this? Will she be herself again?

    1. matador 89

      In Lupus, the immune system attacks healthy cells and tissues by mistake. This can damage the joints, skin, blood vessels and organs. There are many kinds of lupus. The most common type, systemic lupus erythematosus, affects many parts of the body. Discoid lupus causes a rash that doesn’t go away. Subacute cutaneous lupus causes sores after being out in the sun. Another type can be caused by medication. Neonatal lupus, which is rare, affects newborns. Anyone can get lupus, but women are most at risk. Lupus is also more common in African American, Hispanic, Asian and Native American women. The cause of lupus is not known. Unfortunately, you have described one of the possible symptoms of Lupus. Symptoms of lupus can range from mild to severe and may come and go over time. Other symptoms of lupus include chest pain, hair loss, anaemia (a decrease in red blood cells), mouth ulcers, and pale or purple fingers and toes from cold and stress. Some people also experience headaches, dizziness, depression, confusion, or seizures. New symptoms may continue to appear years after the initial diagnosis, and different symptoms can occur at different times. The idea that lupus is generally a fatal disease is a big misconception. In fact, the prognosis of lupus is much better today than ever before. It is true that medical science has not yet developed a method for curing lupus. And some people do die from the disease. However, people with non-organ threatening aspects of lupus can look forward to a normal lifespan. The course of the disease is characterised by periods of remission when the person is free from symptoms and by periods of flare-up when the symptoms return or are not under control.


      It is extremely important to obtain an accurate diagnosis before trying to find a cure. Many diseases and conditions share common symptoms.

      The information provided here should not be used during any medical emergency or for the diagnosis or treatment of any medical condition. A licensed physician should be consulted for diagnosis and treatment of any and all medical conditions.

      Hope this helps
      matador 89

  46. Lady Prism

    People diagnosed with Lupus… need help and info!?
    I do not wish to write a paper about all the details and symptoms, so I’ll just summarize, then ask my question.

    Over the last 5 years, I have had symptoms of EXTREME fatigue, joint pain, canker sores, mild hair loss, etc. I am also anemic (which no amount of iron or B vitamins changes in the slightest). In this time, I have also had a false positive Syphilis test, and chronic kidney stones (3 in 7 years).

    In August of 08, I developed a cough that STILL has not gone away. I have been to TONS of doctors and been diagnosed with pneumonia, asthma, bronchitis, allergies, etc, and put on more antibiotics than I care to think of… all the antibiotic treatments actually made me feel worse.

    I also developed a sudden, strange rash on my leg after being out in the sun for a couple days… which also has not gone away. And more recently, I have a light butterfly rash on my face.

    Last month, I finally found a doctor that said “Wow… 8 of the 11 symptoms of Lupus… let’s get you tested.” I was x-rayed to check for Pleurisy (in the lung tissue), and put through about 10 blood tests (also checking for lyme disease, just in case).

    Even after the false positive Syphilis, and the anemia, I tested negative on the ANA test. Kind of. I tested higher than normal, but apparently too low to make a full diagnosis of Lupus.

    What does this mean exactly? Is there such a thing as borderline Lupus? And I know there are a few other diseases that mimic Lupus… but what are they? I know that Fibromyalgia is one of the “mimic” diseases, but would that also account for the blood disorders that I DO have and the rashes?

    I do have another appointment with my doctor in a couple weeks, and I also know that making a Lupus diagnosis can sometimes take a while… but has anyone had the negative ANA issue and still been diagnosed with SLE? And what was your experience… anything I should ask my doctor to look for on the next visit?

    Oh, they did also check my thyroid… everything normal there.

    And should I mention, also, that my symptoms began during pregnancy and have gotten progressively worse? This has been going for about 5 years… and just now I’ve screamed loud enough that I am being taken seriously.

    1. Constance

      Unfortunately it may take years to DX Lupus. I had all of the symptoms you do and saw a Rheumatologist for about 5 years before my ANA was positive. In the 5 years I also had a pos. Scleroderma and Sjogrens. All along my doctor said that probably I would develop Lupus buy it was a wait and see. Keep a diary of your symptoms and continue to see your doctor. Hope this helps.

Leave a Reply

Your email address will not be published. Required fields are marked *