The Importance of Lupus Lab Work
Welcome to the #LupusChat recap! In this talk, we discussed the importance of lab work for Lupus patients and why certain markers are necessary to diagnose Lupus, monitor disease, and ensure that treatment is working.
We went over some #LupusChat guidelines to help our conversation flow smoothly, then got our #LupusChat party started by sharing our name, where we are from, a little bit about ourselves, and what our favorite cartoon is. Here is a recap of our conversation and here are just a few of the wonderful people who joined us at #LupusChat.
My name is shiffon and I have SLE as well as lupus Nephritis. My birthday is on Sunday yayyy. I’m not going to even lie, but I feel terrible right now. I think my kidneys are inflamed ughh #LupusChat
— ShiffonTheStar ⭐️ (@ThatNewJointx3) July 18, 2021
Hey! Raquel from Texas..I started physical therapy this past week. I don't have a favorite cartoon these days but I do like the Harley Quinn one a lot. #LupusChat https://t.co/D6t7isQPFn
— RaquelRoschell (@raquelonpurpose) July 18, 2021
Hola #LupusChat! I'm Stephanie, in Atlanta. Lupus has lived with me for 8 years. Believe it or not, I don't watch cartoons anymore, but I used to LOVE The Boondocks. pic.twitter.com/MYBwOgYa1p
— itsmorenamorena (@itsmorenamorena) July 18, 2021
Hi.... I'm Elizabeth from NJ and a #Lupuschat co-host.
— Caring For Lupus (@CaringForLupus) July 18, 2021
My connection to lupus is through my daughter Miah.
Her favorite cartoon character is pic.twitter.com/pQ3w2fr1Ws
Hey #LupusChat! I'm Sofia, the "little kid" (with 24 years) from Portugal 😂 I'll love Sailor Moon forever 😍 https://t.co/uMEbQQ024o
— Sofia (@abssofia) July 18, 2021
I’m Lydia from California and I was diagnosed with Lupus in 2006, a few months after completing my first marathon. My favorite cartoon is anything Bugs Bunny and Teen Titans is pretty cool too.##LupusChat
— Little Miss Rogers (@BbygrlRogers) July 18, 2021
Then we began with question 1.
Q1: What is the role of lab tests in monitoring Lupus?
A1: Lab tests are often used by our physicians to both diagnose and monitor lupus. It helps establish a baseline around the time of our diagnosis and allows them to monitor the severity of disease activity over time. #LupusChat
— Tiffany (@TiffanyAndLupus) July 18, 2021
A1 👉 It is important to understand these laboratory tests so you can feel confident as you work with your doctor to better understand your health.#LupusChat
— Caring For Lupus (@CaringForLupus) July 18, 2021
A1. I love that my Rheumie is VERY proactive and likes to keep a close eye on me. For the LONGEST time, she had me do bloodwork monthly. Now that I'm kinda doing the best I've ever done since diagnosis, she relaxed it to every 2-3 months. #LupusChat
— 🇭🇹♊⚽️💜9¾ Felix Felicis (@Xtel007) July 18, 2021
A1: Lab tests help us to monitor lupus by way of the trend of the disease and what areas of the body it may be attacking and the type of lupus (ex. Discoid or systemic-SLE) #LupusChat
— Netert Aset Re 🌞 (@NetertAsetRe) July 18, 2021
Q1: the role to lab test is basically checking to see if our lupus is active or not. I do labs every 3 to 6 months #LupusChat
— ShiffonTheStar ⭐️ (@ThatNewJointx3) July 18, 2021
A1: in my case, they were essential for the diagnosis and to discover "crises". Thanks to them I know that I need to do a renal treatment before it's too late. Hope I explained it well (??) 😬 #LupusChat https://t.co/4qdSg90RD3
— Sofia (@abssofia) July 18, 2021
Once we discussed the importance of lab tests, we then explored what some of our most prominent lab tests do.
Q2: Can one test alone diagnose Lupus? What tests are used?
A2: I do the AVISE SLE Monitoring tests every three months. It offers thorough biomarkers for various disease activity indicators. I think it provides a comprehensive overview of my status #LupusChat
— itsmorenamorena (@itsmorenamorena) July 18, 2021
A2. My kidney doctor and rheumatologist has the Compliment 3 and C4 done. Also tested for ANA and C reactive protein every 3 months. #LupusChat
— Ivey McClelland(she/her)😷😷😷 (@iveyjanette_207) July 18, 2021
A2 Lupus can be difficult to diagnose: no single blood or imaging test can definitively identify it, and its symptoms can be vague, progress slowly, change, or mimic other conditions, such as rheumatoid arthritis. As a result, it’s important to consult a rheumatologist#LupusChat
— Caring For Lupus (@CaringForLupus) July 18, 2021
A2 Diagnosis can be challenging because of its wide range symptoms that may come on slowly & change over time. It's usually made by the clinical evaluation of physical signs/symptoms in combination w/tests that can help to confirm the diagnosis or rule out other causes#LupusChat
— Caring For Lupus (@CaringForLupus) July 18, 2021
A2: In 2020, @eular_org & @ACRheum published a new criteria for the classification of systemic lupus erythematosus. You can read more about it here: https://t.co/Ie6G5ptudU #LupusChat pic.twitter.com/pNg8DhscSD
— Tiffany (@TiffanyAndLupus) July 18, 2021
Our tests are utilized to detect specific activity along varying points in our journey. For Question 3 we delved deeper into certain tests and their uses.
Q3: Why do doctors check urine? What does it help detect?
A3: From my understanding it is to check how much protein is being released in the urine. In my experience it was another way to monitor kidney function. There may be other uses but I'm not aware of them off the top of my head. #LupusChat
— Netert Aset Re 🌞 (@NetertAsetRe) July 18, 2021
A3 Symptoms of kidney disease also often include swelling of the ankles, feet, legs, and, less commonly, the face or hands, as well as puffy eyes upon waking.#LupusChat
— Caring For Lupus (@CaringForLupus) July 18, 2021
A3: Your doctors may send you for a urinalysis to check if your kidneys are functioning properly. If there are high levels of proteins (proteinura) or red blood cells (hematuria) found in your urine it could be a sign that lupus is causing inflammation in your kidneys. #LupusChat
— Tiffany (@TiffanyAndLupus) July 18, 2021
Q3: I know for me it’s definitely for my kidney function #LupusChat
— ShiffonTheStar ⭐️ (@ThatNewJointx3) July 18, 2021
A3. Protein in the urine. It was how I was diagnosed with SLE and lupus nephritis in January 1995. Also for any kidney disease and level of kidney damage. #LupusChat
— Ivey McClelland(she/her)😷😷😷 (@iveyjanette_207) July 18, 2021
A3 The doctors are checking the health of your kidneys by seeing if they detect protein in the urine,which could be a sign of kidney failure.#LupusChat
— Little Miss Rogers (@BbygrlRogers) July 18, 2021
The timing of each test is very important. For question 4 we explored how the timing of our lab work is important for monitoring our disease activity.
Q4: Why is it helpful to get lab work done prior to our appointments?
A4: It’s important to get your lab tests done BEFORE your appointments with your doctors so they have accurate and updated information in relation to your health during your visit. This helps them understand how you're doing & change your treatment plan if needed. #LupusChat
— Tiffany (@TiffanyAndLupus) July 18, 2021
A4 Getting labs completed prior to an appointment can make your appointment more efficient;informing the doctor in advance and making a more meaningful interaction with available records to discuss.#LupusChat
— Little Miss Rogers (@BbygrlRogers) July 18, 2021
Q4: to know what kind of treatment we need when we go to our appointment. I have to go take blood tomorrow for my appointment on Thursday #LupusChat
— ShiffonTheStar ⭐️ (@ThatNewJointx3) July 18, 2021
A4: It's good to get the labs done right before our appointments bc our doctors can help to make adjustments to current medicines or prescribe new ones. Also, it is good to help explain our labs and answer our questions.#LupusChat
— Netert Aset Re 🌞 (@NetertAsetRe) July 18, 2021
A4. Getting your lab work done before helps in a sense have something to talk about at your routine visit. With the lab results and your report on how you are feeling, it's easier for you and you care team to make a plan. #LupusChat
— 🇭🇹♊⚽️💜9¾ Felix Felicis (@Xtel007) July 18, 2021
A4. I've only recently started doing this, and it really is super helpful. By the time I see rheumie, we have very recent results that we can discuss. #LupusChat
— 🇭🇹♊⚽️💜9¾ Felix Felicis (@Xtel007) July 18, 2021
For Question 5, we explored how testing organs directly can be helpful when monitoring Lupus activity.
Q5: How are biopsies (ex: skin, kidney, etc) used in diagnosing and monitoring Lupus?
A5: Biopsies can help to see how healthy our organs are and how much lupus may be attacking them. It also can help to determine how much and which medicines to prescribe to prevent any further damage. #LupusChat
— Netert Aset Re 🌞 (@NetertAsetRe) July 18, 2021
A5. Biopsies help doctors detect damage to the organs or body. And to decide what treatment will be done. #LupusChat
— Ivey McClelland(she/her)😷😷😷 (@iveyjanette_207) July 18, 2021
A5: The skin and kidney are the most common areas of the body that are biopsied in someone who may have lupus. The biopsy helps to show the amount of inflammation and/or damage being done to the tissue. #LupusChat
— Tiffany (@TiffanyAndLupus) July 18, 2021
Q5: a biopsy is used to take a piece of the affected area and then be sent off for further testing pertaining to lupus. I had to 2 biopsy one on my kidneys and on my elbow because I had a bad reaction to imuran (I don’t know if I spelled that medication right)#LupusChat
— ShiffonTheStar ⭐️ (@ThatNewJointx3) July 18, 2021
Yup, I'm likely going to have a second kidney biopsy next year. My rheumatologist told me during my last visit that it's been 5 years since my last nephritis flare so they want to see how my kidneys have progressed since then. (A5) #LupusChat
— Tiffany (@TiffanyAndLupus) July 18, 2021
Finally came our final question, where we discussed a very important test in disease diagnosis.
Q6: What is an ANA test and what can it indicate?
Q6: What is an ANA test and what can it indicate?
A6 The ANA test measures the inflammatory markers in your body. Once one has reached a certain level, in addition to other symptoms,the doctor can determine Lupus and whether it is elevated,maintained or in remission.#lupuschat
— Little Miss Rogers (@BbygrlRogers) July 18, 2021
A6. ANA, along with proteinuria and white blood cell counts, is one of those numbers my rheumie monitors closely. She has been patting herself on the back lately about how good they are looking lol. #LupusChat
— 🇭🇹♊⚽️💜9¾ Felix Felicis (@Xtel007) July 18, 2021
Q6: antinuclear antibody. An ANA test looks for antinuclear antibodies in your blood. #LupusChat
— ShiffonTheStar ⭐️ (@ThatNewJointx3) July 18, 2021
A6. The ANA test is used to check the levels of inflammation in the body. And to check for autoimmune disease and to determine what medication and treatment will be used. And if the disease has progressed or went into remission. I have the ANA test every 3 months. #LupusChat
— Ivey McClelland(she/her)😷😷😷 (@iveyjanette_207) July 18, 2021
A6: An ANA (Antinuclear Antibody) test shows if there are autoantibodies being produced by the immune system. A positive ANA usually means your immune system is attacking its own healthy tissues and is a sign of possible autoimmune disease. #LupusChat
— Tiffany (@TiffanyAndLupus) July 18, 2021
A6 As per the @LupusResearch #Lupuschat pic.twitter.com/2xn4dPX7ZY
— Caring For Lupus (@CaringForLupus) July 18, 2021