diagnosis – LupusCorner https://lupuscorner.com Health Info on Lupus Symptoms, Treatments & Research Thu, 20 Feb 2020 18:38:08 +0000 en-US hourly 1 https://wordpress.org/?v=6.2.4 https://lupuscorner.com/wp-content/uploads/2019/07/cropped-lupuscorner-new-profLogo-nobg-32x32.png diagnosis – LupusCorner https://lupuscorner.com 32 32 ANA Tests and Lupus https://lupuscorner.com/ana-tests-and-lupus/ https://lupuscorner.com/ana-tests-and-lupus/#comments Mon, 18 Feb 2019 17:40:52 +0000 http://goodlife.fuelthemes.net/fashion-demo/?p=314 The post ANA Tests and Lupus appeared first on LupusCorner.

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ANA tests identify autoantibodies in the body. And, they are one of the tools that clinicians use to help diagnose lupus.

Rheumatologists review laboratory tests, symptom logs, and family history before making a lupus diagnosis. This can be a long and challenging process. ANA tests are a crucial element as they offer insight into the functioning of the immune system by measuring the presence of particular proteins in the blood.

The newest criteria for determining a lupus diagnosis was established by the American College of Rheumatology (ACR) and the European League Against Rheumatism (EULAR) in 2018. The first requirement of the criteria to be diagnosed is:

  • Positive ANA test with a titer of at least 80

The titer value relates to the ratio of blood serum being tested to a dilution agent. So, a titer of 80 would mean that for every 80 parts of dilution, there was one part of blood serum. The higher the dilution, the more antibodies would need to be in the blood sample to return a positive result for the test.

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What are Antinuclear Antibodies (ANA)?

Before jumping to antinuclear antibodies, we will start with antibodies. Antibodies are proteins made by your immune system that help your body recognize and fight harmful substances, such as bacteria and viruses, by activating the immune system to target them. You can think of antibodies as the soldiers that protect your body from bad, foreign invaders.

Sometimes, antibodies mistakenly attack healthy cells and tissues in the body. This is known as an autoimmune response. Antibodies that target healthy proteins specifically in the nucleus of your cells are called antinuclear antibodies (ANA). To continue the analogy from above, ANAs are rogue soldiers that misidentify the cells they are supposed to ignore, and attack them in error.

 

NOTE: Most people have some ANA, but having too many of these proteins puts you at an increased risk for developing an autoimmune disease, such as lupus.

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Who Gets ANA Tests?

Typically, an ANA test is ordered when someone has symptoms that may indicate a systemic autoimmune disease. Some examples of symptoms that may prompt a doctor to order the test include (but are not limited to):

  • low-grade fevers
  • arthritis-like pain
  • fatigue
  • weakness
  • headaches
  • rashes
  • muscle pain

Even with a positive ANA test result, it is not clear that a person has lupus. A study published in 2003 in the New England Journal of Medicine found that 88% of people (115 out of 130) eventually diagnosed with lupus had received a positive autoantibody lab result multiple years prior to the diagnosis. On average, that positive test result occurred 3.3 years before the diagnosis was confirmed.

Quick Stats on ANA Tests and Lupus

  • 97% of people with lupus will have a positive ANA test.
  • Between 5-20% of the general population will have a positive ANA test. A positive test can be a false-positive, or indicate other conditions, such as thyroid disease, certain liver conditions, or other autoimmune diseases.
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What Should I Know About ANA Tests and Lupus?

  • There is no one definitive test for lupus – an ANA test is just one tool used to help diagnose lupus.
  • The ANA test is not a specific test for lupus. This means that most people with lupus will have a positive ANA test, but not everyone with a positive ANA test has lupus.
  • Some medications can produce a positive ANA test, so be sure to tell your doctor about any prescription or over-the-counter drugs you take.
  • Test results can fluctuate over time and when they are performed at different labs. However, if you have active lupus, your ANA test will probably be positive at most labs, most of the time.

How is an ANA Test Performed?

  • An ANA test is performed in a laboratory, using a sample of your blood.
  • The test shows if your immune system is producing antinuclear antibodies. A positive ANA test means antinuclear antibodies are present.
  • The most common strategies used for detecting and measuring ANAs are indirect immunofluorescence and enzyme-linked immunosorbent assay (ELISA).
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What Should I Do if My ANA Test is Positive?

  • Your doctor will interpret your ANA test in the context of your symptoms, other lab work, and your medical history, including family history. Keeping a symptom journal or using digital tools can help you be better prepared to go over your symptoms with your doctor.
  • Remember, a single positive ANA does not mean you have an autoimmune disease. And a positive ANA test does not require immediate treatment. Your lupus treatment team will take the ANA test results in context with many other factors.

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Lupus Diagnosis: Connecting the Dots https://lupuscorner.com/getting-a-lupus-diagnosis/ https://lupuscorner.com/getting-a-lupus-diagnosis/#comments Sat, 03 Nov 2018 17:39:20 +0000 http://goodlife.fuelthemes.net/fashion-demo/?p=318 The post Lupus Diagnosis: Connecting the Dots appeared first on LupusCorner.

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Known as “The Great Imitator,” getting a lupus diagnosis can be frustrating. It involves reviewing laboratory tests, symptoms, and family history.

When you’re not feeling well, you want to know what the cause is. Unfortunately, it is not uncommon for the lupus diasgnosis process to take months or years as doctors evaluate the web of symptoms that are associated with this complex disease.

Any physician can diagnose you with lupus including your primary care provider (PCP), hospitalists, or pediatricians. However, rheumatologists are experts in diagnosing and treating autoimmune diseases such as lupus.

LupusCorner conducted a poll of 119 Lupus Warriors about the lupus diagnosis process. More than 1/3 reported seeing 6 or more doctors before getting a diagnosis. Only 14% reported getting a diagnosis from their original doctor.

While this may suggest that seeing more doctors will hasten your diagnosis, keep in mind that there are complexities with changing clinicians. Each new doctor will need to conduct a thorough review of your current and past symptoms. Medical records are still not always quickly or effectively shared between hospital systems. And, it may result in redundant laboratory tests which can be costly.

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Laboratory tests & lupus diagnosis

Lab tests help clinicians better understand how the body is functioning at the system, organ, and cellular levels. Throughout the course of care, these tests are used to monitor disease progression, too. However, there is not currently a single laboratory test to determine if a person has lupus.

Blood tests

  • Antinuclear antibody test (ANA)
    • Antinuclear antibodies are parts of the immune system that attack the body instead of foreign invaders
    • A positive ANA is the first requirement for the new lupus diagnosis guidelines created by the American College of Rheumatology (ACR) and the European League Against Rheumatism (EULAR)
  • Complete blood count (CBC)
    • Measures key components from the blood including:
      • red blood cells which carry oxygen through the body
      • white blood cells which are part of the immune system and attack invaders
      • hemoglobin, the oxygen-carrying protein in red blood cells
      • hematocrit, the percentage of red blood cells in the blood
      • platelets which contribute to blood clotting
  • Prothrombin time (PT) test
    • Coagulation tests measure how long it takes blood to clot
  • Complement tests (C3 and C4)
    • Measure proteins in the blood that make up the complement system in the immune system
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Common Symptoms & Lupus Diagnosis

Lupus is the cause of inflammation and swelling throughout the body. It can result in a number of symptoms, many of which can come and go over time. Because of this, it’s important to keep track of symptoms using a journal or a digital tool.

LupusCorner app, available on both iOS and on Android, includes an easy symptom tracker (along with a medication tracker and a community forum).

Symptoms to monitor include:

When tracking symptoms, it’s not only important to know which symptoms you are experiencing. It is also necessary to record when symptoms start and stop, the severity of a given symptom, and the frequency.

Beyond tracking symptoms, clinicians will also look at family history because of the genetic component to lupus. Also, it’s important to share illnesses other than lupus, particularly other autoimmune conditions including Crohn’s disease, multiple sclerosis (MS), and rheumatoid arthritis (RA).

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Getting Support During the Lupus Diagnosis Process

Your time with a rheumatologist is valuable. Here are some tips to make the most of it!

  • Take notes
    • It can help you remember what was said and jog your memory later
  • Ask questions
    • Don’t be afraid to ask! If something is unclear  or needs additional explanation, just ask. And this extends to after the visit as well – don’t be afraid to call the clinic
  • Make a list of your medications & symptoms before getting there
    • Medication reconciliation is part of the steps of a visit. Don’t waste time trying to remember
  • Bring a friend or family member
    • Having someone else in the room with you can ensure you get your questions answered during the visit and can help with visit follow ups

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Share Your Story: Sandra’s Diagnosis https://lupuscorner.com/share-your-story-sandras-diagnosis/ https://lupuscorner.com/share-your-story-sandras-diagnosis/#comments Tue, 05 Jun 2018 09:10:57 +0000 https://lupus-appli-1kjf77zfuvjpc-635402343.us-east-1.elb.amazonaws.com/?p=2209 The post Share Your Story: Sandra’s Diagnosis appeared first on LupusCorner.

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Welcome to Share Your Story — Where Lupus Warriors tell their own stories, in their own words.

Editor’s note: Share Your Story is a new segment where anyone can write personal pieces that will be published anonymously on LupusCorner.  If you are interested in contributing to Share Your Story, please send an email to LupusCorner at: hello@lupuscorner.com

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Author information:

Name: Sandra

Lives in: Connecticut

Age: 55 years old

Diagnosed with lupus: 2004

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Share Your Story: Sandra’s Diagnosis

On May 10, 2010 I was climbing the stairs after a long Mother’s Day and heading upstairs to bed. As I climbed the stairs, my heart started winding up and my breathing got much labored.

When I finally got to the landing by my bedroom, my heart got faster and kept beating faster and was not rewinding or slowing down. I got very afraid, grabbed my jacket and drove myself down to the bottom of the hill to the William Backus Hospital. I just told my husband and my kids, I had to go somewhere. I did not want to worry them.

9 Months before this happened, I was having the following symptoms before being diagnosed with anything:

  • I could hear my heartbeat in my head like a mantra. (Scary)
  • I lost my appetite.
  • My fingers and toes were getting numb whenever it got cold. Even today the toes are hard to warm up.
  • My stomach, although empty because I didn’t want to eat, got bloated and uncomfortable. But, my clothes started getting loose.
  • I got tremendous pain in my legs, thighs, knees and pelvis. The severe pain in my hips made walking excruciating. I pushed through the pain because I didn’t want to lose my job.  My job required a lot of walking (Security Officer/Casino).

I went to a physician, who really could not care much, because he was about to retire. He did blood work on me and never called me back.

Three weeks later, it was Mother’s Day and after going to work for almost a year, barely being able to climb stairs or do any kind of activities without the fatigue making me want to fall over, I went home and fell over.

Each day leading up to this, I made it through my 0830-1630 work day, came home breathing hard, barely able to get out of my car because of the pain and went directly to bed. The only comfort I felt was being in my bed where I did not have to move or do anything.

My kids suffered because of what I was going through, but I didn’t have the energy to do more than my body would allow. Sometimes it felt like I slept for days. Food wasn’t even thought of. I felt like I was dying.

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So there I was on May 10, 2004. I drove myself to the hospital and they admitted me immediately.

My hemoglobin was 4.6. The doctor told me that I was lucky I didn’t have a stroke or heart attack. The first thing they did was pump me with 80 mg of prednisone.

I stayed in the hospital for 1 week.  I called it the Backus Hospital Spa because I got more rest in that week than I have since I had my first of four children in 1983. My last child was born in 1990.

It was at the hospital after constant blood work and tests that I was diagnosed with Systemic Lupus Erythematosus (SLE) and Hemolytic Anemia.

Although my life will consist of a Hematologist and a Rheumatoid doctor for its remainder, I am flabbergasted to still be here today. I never thought people could suffer such horrendous pain that they could end up getting used to it. I don’t know how I continued to take steps some days and make it through my day.

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The Prednisone and the Cocktail of Pills that my doctors all arranged for me to take over the years have worked and I want to end my introduction with this important fact. I don’t want to get long winded.

If I don’t share anything else with fellow Chronic Illness and Autoimmune disease sufferers, I want to share this:

Learn about your illness, keep track of all of your symptoms and communicate with all of your doctors.

Make sure that your doctors communicate with each other. When you get bloodwork from one doctor, send a copy to your other doctors or have your attending fax it to them.

Learn the language of medicine as it pertains to your illness and more if you have the inclination. I was fascinated with medicine before I got sick, so I read a lot and learned terms that doctors might call “Shop Talk.”  Whenever they explained something to me, sometimes I could finish their thoughts before they finished and what I gained from them for that was Respect.

Make a Journal.

Educate your children about your disease. When something isn’t happening to a young person, they don’t get how sick you are because they are so used to you taking care of them. I went through so much with different ones of my children. I taught my kids the Spoon Theory. Some understand that my illness limits me, and sometimes I went through times where one of my children was so wrapped up in their own struggles, that they didn’t want to hear the word Lupus anymore. Well it’s here to stay so, get used to it.

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So thank you for listening. My husband died three years after I was diagnosed with my illnesses. I had one other relationship and when that one ended, I kind of gave up on love, but I am an introvert who cherishes alone time. So I go to work each day, take my cocktail of medicines and keep all my doctor appointments which are many. But I am leading a good life which is moderately painful, but as I stressed above, if you have good caring doctors, which I do, you can live with Lupus. I wish I didn’t have the Anemia too and could get off of Prednisone, but alas, they haven’t found anything that can control my Hemoglobin deficiency yet.

A good month for me is if by some Miracle, my Hemoglobin reaches a 10.  Prednisone has been a part of my life for 13 years now. Today, I take Cellcept from the Rheumatoid, which I despise, and three milligrams of Prednisone a day. I wish I could throw them both in the garbage. I’m supposed to take 1500 mg. of Cellcept, but I can’t bring myself to swallow three of those pills a day. I also take other meds daily (Atenolol, Lisinopril, Folic Acid and Meclizine as needed for vertigo).

But I’m surviving. God Bless you all.

–Sandra

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