Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.
Hi everyone, I am new to this group and had some questions about the tests.
This year I went to the dermatologist because I got a rash after being at the zoo for several hours. Since I was young I always got weak and sick from being in the sun, but never thought much about it. She thinks that I have polymorphus light eruptions, but wants to rule out Lupus.
After looking at what is involved with Lupus the more I am wondering if I do have it. I have had Joint pain for the last 13 years. I always have blood in my urine. I get a cough for no apparent reason. I also have lots of swelling all of the time.
I am very busy mom and don't usually take the time to think about these things for myself.
Anyway, My Derm. gave me a labsheet to take with me to my physical which is next month. I noticed that she only ordered the antinuclear antibodies test. I was reading online and it looked like I should be getting more tests done than just this one.
So sorry for the long post, but I wanted find out as much as I can before I go to my physical. Should I be having more tests done? What kind of questions do you suggest that I ask my doctor about?
Thank you all.
This year I went to the dermatologist because I got a rash after being at the zoo for several hours. Since I was young I always got weak and sick from being in the sun, but never thought much about it. She thinks that I have polymorphus light eruptions, but wants to rule out Lupus.
After looking at what is involved with Lupus the more I am wondering if I do have it. I have had Joint pain for the last 13 years. I always have blood in my urine. I get a cough for no apparent reason. I also have lots of swelling all of the time.
I am very busy mom and don't usually take the time to think about these things for myself.
Anyway, My Derm. gave me a labsheet to take with me to my physical which is next month. I noticed that she only ordered the antinuclear antibodies test. I was reading online and it looked like I should be getting more tests done than just this one.
So sorry for the long post, but I wanted find out as much as I can before I go to my physical. Should I be having more tests done? What kind of questions do you suggest that I ask my doctor about?
Thank you all.
No two cases of lupus are exactly alike. Signs and symptoms may come on suddenly or develop slowly, may be mild or severe, and may be temporary or permanent. Most people with lupus have mild disease characterized by episodes called flares when signs and symptoms get worse for a while, then improve or even disappear completely for a time.
The signs and symptoms of lupus that you experience will depend on which body systems are affected by the disease. But, in general, lupus signs and symptoms may include:
Fatigue
Fever
Weight loss or gain
Joint pain, stiffness and swelling
Butterfly-shaped rash (malar rash) on the face that covers the cheeks and bridge of the nose
Skin lesions that appear or worsen with sun exposure
Mouth sores
Hair loss (alopecia)
Fingers and toes that turn white or blue when exposed to cold or during stressful periods (Raynaud's phenomenon)
Shortness of breath
Chest pain
Dry eyes
Easy bruising
Anxiety
Depression
Memory loss
When to see a doctor
If you develop an unexplained rash, ongoing fever, persistent aching or fatigue, see your doctor.
If you've already been diagnosed with lupus, meet with your doctor on a regular basis so that your condition and treatment can be monitored. Make an appointment with your doctor if new symptoms arise.
Here's some information to help you prepare for your first appointment, and what to expect from your doctor.
What you can do
Write down your symptoms, including when you first noticed them and how often they occur.
Write down key personal information, including any recent changes or major stressors in your life.
Make a list of your key medical information, including any other conditions for which you're being treated and the names of any medications, vitamins or supplements you're taking. Your doctor will also want to know if you have any family history of lupus or other autoimmune disorders.
Take a family member or friend along, if possible. Sometimes it can be difficult to soak up all the information provided to you during an appointment. Someone who accompanies you may remember something that you missed or forgot.
Write down questions to ask your doctor. Creating your list of questions in advance can help you make the most of your time with your doctor.
For lupus, some basic questions to ask your doctor include:
What are the possible causes of my symptoms or condition?
What tests do you recommend?
If these tests don't pinpoint the cause of my symptoms, what additional tests might I need?
Are there any treatments or lifestyle changes that might help my symptoms now?
Do I need to follow any restrictions while we're seeking a diagnosis?
Should I see a specialist?
In addition to the questions that you've prepared to ask your doctor, don't hesitate to ask questions during your appointment at any time that you don't understand something.
What to expect from your doctor
Your doctor is likely to ask you a number of questions. Being ready to answer them may reserve time to go over any points you want to spend more time on. Your doctor may ask:
What are your symptoms? What part of your body is affected?
When did you first notice these symptoms?
Have your symptoms changed over time?
Do your symptoms seem to come and go?
Have you noticed anything that seems to trigger your symptoms?
Do your symptoms include extreme fatigue?
Have you had pain, stiffness or swelling in your joints?
Does sun exposure cause you to develop skin rashes?
Do your fingers or toes turn cold, pale or purple from cold or stress?
Do your symptoms include chest pain with deep breathing?
Have you experienced shortness of breath?
Have you had an unexplained fever?
Do your symptoms include any problems with memory or concentration?
How often do you feel anxious or depressed?
How much do your symptoms limit your ability to function at school, work or in personal relationships?
Have you been diagnosed with any other medical conditions?
Are you taking any medications, including over-the-counter and prescription drugs as well as vitamins and supplements?
Have any first-degree relatives such as a parent or sibling had lupus or another autoimmune disease?
Are you pregnant or do you plan to become pregnant?
What you can do in the meantime
While you're waiting for your appointment, get as much rest as your body seems to need and limit activities that wear you out. Try to reduce stress and schedule time only on activities that you enjoy and that help you manage stress. You may find that relaxation techniques such as yoga and meditation help improve your symptoms and your ability to cope.
Diagnosing lupus is difficult because signs and symptoms vary considerably from person to person. Signs and symptoms of lupus may change over time and overlap with those of many other disorders. For these reasons, doctors may not initially consider lupus until the signs and symptoms become more obvious. Even then, lupus can be challenging to diagnose because nearly all people with lupus experience fluctuations in disease activity. At times the disease may become severe and at other times subside completely.
American College of Rheumatology criteria for a lupus diagnosis
The American College of Rheumatology (ACR) has developed clinical and laboratory criteria to help physicians diagnose and classify lupus. If you have 4 of the 11 criteria at one time or individually over time, you probably have lupus. Your doctor may also consider the diagnosis of lupus even if you have fewer than four of these signs and symptoms. The criteria identified by the ACR include:
Face rash, which doctors call a malar rash, that is butterfly shaped and covers the bridge of the nose and spreads across the cheeks
Scaly rash, called a discoid rash, which appears as raised, scaly patches
Sun-related rash, which appears after exposure to sunlight
Mouth sores, which are usually painless
Joint pain and swelling that occurs in two or more joints
Swelling of the linings around the lungs or the heart
Kidney disease
A neurological disorder, such as seizures or psychosis
Low blood counts, such as low red blood count, low platelet count (thrombocytopenia), or a low white cell count (leukopenia)
Positive antinuclear antibody tests, which indicate that you may have an autoimmune disease
Other positive blood tests that may indicate an autoimmune disease, such as a positive double-stranded anti-DNA test, positive anti-Sm test, positive anti-phospholipid antibody test or false-positive syphilis test
Laboratory tests
Your doctor may order blood and urine tests to determine your diagnosis, including:
Complete blood count. This test measures the number of red blood cells, white blood cells and platelets as well as the amount of hemoglobin, a protein in red blood cells. Results may indicate you have anemia, which commonly occurs in lupus. A low white blood cell or platelet count may occur in lupus as well.
Erythrocyte sedimentation rate. This blood test determines the rate at which red blood cells settle to the bottom of a tube in an hour. A faster than normal rate may indicate a systemic disease, such as lupus. The sedimentation rate isn't specific for any one disease, but it may be elevated if you have lupus, another inflammatory condition or an infection.
Kidney and liver assessment. Blood tests can assess how well your kidneys and liver are functioning. Lupus can affect these organs.
Urinalysis. An examination of a sample of your urine may show an increased protein level or red blood cells in the urine, which may occur if lupus has affected your kidneys.
Antinuclear antibody (ANA) test. A positive test for the presence of these antibodies produced by your immune system indicates a stimulated immune system, which is common in lupus and other autoimmune diseases. A positive ANA doesn't always mean that you have lupus, however. ANA levels can be elevated if you have an infection or if you're taking certain medications. If you test positive for ANA, your doctor may advise more-specific antibody testing and refer you to a rheumatologist, a doctor who specializes in musculoskeletal and autoimmune disorders such as arthritis or lupus.
Chest X-ray. An image of your chest may reveal abnormal shadows that suggest fluid or inflammation in your lungs. It may also show an enlarged heart as a result of a buildup of fluid within the pericardium (pericardial effusion).
Electrocardiogram (ECG). This test measures the pattern of electrical impulses generated in your heart. It can help identify irregular rhythms or damage.
Syphilis test. A false-positive result on a syphilis test can indicate anti-phospholipid antibodies in your blood, another indication of lupus. The presence of anti-phospholipid antibodies has been associated with an increased risk of blood clots, strokes and recurrent miscarriages.
Hope this all helped good luck with your appointment!
I never looked at my toes before because they hurt unless I have socks and slippers on. So today after I took my shower I didn't have socks ready and it took me about 15 minutes before I couldn't stand the pain any more. When I looked at them, they were getting really dark on the toes. My feet have hurt like this for the past 13 years. But I don't understand, because even in hot weather my feet are cold and hurt, not just in the cold.
I have another question. I saw somewhere that if you have lupus that it can give false readings on other tests. I was diagnosed with Hashimoto's (auto immune hypothyroidism) five years ago. One of the tests that was listed was antibodies for the thyroid. How does lupus affect the tests for the thyroid antibodies?