7 Things You Need to Know About Living with Lupus

After months or even years of experiencing symptoms like extreme fatigue, skin rashes, pain, or swelling in the joints, you finally got a diagnosis. It’s lupus. Because symptoms differ from person to person, can come and go, vary in intensity, and mimic symptoms of various other diseases, lupus can be difficult to diagnose. Lupus is a chronic autoimmune disorder where the immune system’s antibodies mistakenly attack the body’s healthy cells causing widespread inflammation. It can affect your joints, muscles, skin, and internal organs and affects about 1.5 million Americans. Despite the prevalence and severity of lupus, most people don’t know much about it. The lack of information can make living with lupus frustrating, difficult, and lonely. We connected with PLM members who have lupus to find out what it’s really like to live with lupus. Here are 7 things to know about living with lupus: 1.Your life will change Living with lupus is a difficult task. While you may have been experiencing symptoms for a while, once you receive a diagnosis and begin treatment, that’s when it becomes real. Your entire life will change. Those “simple pleasures in life”, like making a cup of coffee (or tea) in the morning, going …

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From Lupus Diagnosis to Fearless Patient Advocate

Meet Alyshia Alyshia Merchant was always healthy, but as a busy mom, she did experience fatigue from time to time. However, it wasn’t until she was out to dinner in 2012 when the early signs of her condition became more apparent. Her friends pointed out a rash that had spread across her cheeks and nose. This innocuous comment would soon lead her to a life-altering discovery that she had Lupus nephritis, an autoimmune disease that threatened her health and quality of life. After multiple conversations with doctors who told her to get more sleep and take more vitamins, it took a fainting episode at work that landed her in the emergency room for her condition to be taken seriously. After a few tests, bloodwork, and a biopsy, her nephrologist officially diagnosed Alyshia with Lupus. Alyshia is not alone in having trouble getting an accurate diagnosis. Lupus can be challenging to identify because it impacts many different parts of the body and presents in a variety of ways. The Lupus Foundation of America has compiled a list of common symptoms and recommends you advocate for how you feel when you speak with your doctor. They also offer a helpful symptom questionnaire …

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Lupus and period problems, explained

Are you living with lupus (SLE) and experiencing problems with your monthly period? (Like, not getting it. Or having a really heavy, long period.) And have you ever wondered how lupus might play a role in this? Read on. What does the research show? Small studies have found that people with SLE are at greater risk of menstrual irregularities compared to the general/healthy population. The greatest type of irregularity appears to be sustained amenorrhoea (long-term absence of a period). Some people with SLE experience premature menopause. These factors may increase the risk of period irregularities: Being age 30+ Being on cyclophosphamide therapy (a chemotherapy drug) Taking immunosupressants (see a list of immunosupressive medications used to treat lupus) Young people (17 and under) with juvenile SLE also experience period irregularity and hormone abnormalities, research has shown. If you’re not getting your period (at any age), tell your doctor and ask how your lupus, treatments and other factors (such as menopause or any other health conditions you may have, like polycystic ovary syndrome) could be affecting “Aunt Flo.” If you are getting a heavy or prolonged period, it’s also important to talk with your doctor and get checked for anemia, which is already a common problem in people with lupus. Some women find …

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Family activities with a health condition

Your chronic health condition may steal your energy, but it shouldn’t rob you of family fun. Jeanette Alston-Watkins was diagnosed with lupus (SLE) when her kids were 11 and 14. Check out this Q&A about activities she enjoyed with them despite SLE. Try some of these with your children or grandchildren over the upcoming holiday break! (Check out more of Jeanette’s story and perspective on parenting with lupus.) What are some activities you did with your kids when you were fatigued or weren’t feeling well? When the kids were growing up and I just was exhausted to the point where I could only make it to the couch, we would play board games, video games or card games. Sometimes, I would make them read to me or I’d read to them. If I was really hurting, I would have them cook for me, and I would watch them add the ingredients. It taught them how to cook, while helping me out without them even realizing. Easy, relaxing things that wouldn’t aggravate any symptoms was the way to go for me. (See some of Jeanette’s favorite recipes that work well with her lupus.) And what kinds of activities did you and your family …

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Lupus Diagnosis - Lupus Self Test - Hetlana

Lupus Diagnosis and Lupus Self Test: Member Hetlena’s pointers for her old (newbie with SLE) self”

What would someone who has lived with lupus (SLE) for decades tell her younger, newly diagnosed self? PatientsLikeMe member Hetlena (@TheLupusLiar), who was diagnosed with lupus in 1993, recently answered that question for us in the following personal essay reflecting on what she’s learned through the years… “This isn’t the end. There are other things that can give your life meaning.” —Christine Palmer, Dr. Strange (2016 film) In the 2016 movie Dr. Strange, a main character, Christine Palmer, captures how it feels to be confused, frustrated and hopeless – feelings I’m very familiar with because of SLE. The diagnosis of lupus can be mixed with pain, nausea, fever, swelling and all too many other symptoms and ailments combined. From the very beginning, it became more than I could bear – or at least so I thought. I felt targeted all the time. When I reflect on my feelings right after my diagnosis, I remember most of all that I didn’t feel confident. If I knew then what I know now, I would… Question everything There was so much about lupus that I didn’t know about (and years later, there still is). Naturally, a diagnosis or the confirmation of one can come as a …

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Parents with lupus (or any health condition) ‘don’t have to be perfect’ — take it from this mom

PatientsLikeMe member Jeanette Alston-Watkins (JeanetteA6872) was diagnosed with lupus in 2006, when her kids were 11 and 14. “My kids are my strength and they gave me energy and willpower,” she says in this Q&A about parenting with SLE. (Jeanette is on our 2018 Team of Advisors.) Can you share a bit about your diagnosis and how it impacted your children? They were 11 and 14 when I was diagnosed with lupus, but I started getting symptoms three years before, if not earlier. They didn’t understand why their mom was always sick and tired. To give you a little background on me, I need to always stay busy. When I was diagnosed with lupus in 2006, I had just recently been married (less than a year) and I was working full-time as a sales manager for a manufacturing plant. I was going to school part-time to complete my bachelor’s degree in business. I was a team mom for my son’s football and lacrosse teams, and for my daughter’s soccer and lacrosse teams, and I also assisted with her volleyball team. I really stayed busy. So, when you’re that busy and have all this energy, people notice when your energy level isn’t …

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Lupus Weight Gain: Q&A with the founder of Making Lupus Look Good

Alyshia Merchant knows first-hand how lupus can affect you inside and out. After her diagnosis in 2012 and struggles with visible symptoms and self-esteem, she launched an organization called Making Lupus Look Good, which provides wigs and “glam sessions” to people with lupus-related hair loss and other symptoms. The organization currently serves people in Alyshia’s home state, Virginia, but she hopes to establish a 501(c)(3) and take the organization to a national level soon. Alyshia recently shared more with us in this Q&A. Can you tell us more about Making Lupus Look Good and what inspired you to start it? My entire experience with lupus has affected my self-confidence tremendously. I would take pictures of myself and compare them to older pictures, and it was a very emotional experience. In the midst of my struggle, I developed a passion to help rebuild the self-esteem of other women living with the same insecurities that I struggle with day in and day out. My life is now dedicated to helping women see that they are still beautiful – despite whatever insecurities lupus may throw their way. It was my own pain that inspired me to create Making Lupus Look Good. I’ve found that …

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What’s the lupus/kidney connection? Our healthcare pros explain lupus nephritis and more

“Kidney” is one of the top terms that PatientsLikeMe members are searching for in the lupus forum (click here to join the site for forum access). Last year’s news of Selena Gomez’s kidney transplant put a spotlight on the lupus/kidney link. Lupus can affect your kidneys in a few different ways, so we asked our Health Data Integrity Team (our in-house clinical healthcare professionals) to help us learn more. What is lupus nephritis? Lupus nephritis is an inflammation of the kidneys caused by an autoimmune response. Lupus can cause an autoimmune attack on various parts or tissues in your body, including the kidneys. During this attack, the immune system turns on itself and tries to fight off “foreign invaders” — which are actually your body’s own healthy cells. This can trigger inflammation and swelling of the tissue in an attempt to eliminate foreign bodies. Lupus nephritis can impair the kidneys so they’re not able to properly remove waste or control fluids in your body. Left untreated, nephritis can lead to more serious kidney disease. Cases may range from mild to severe, depending on the signs and symptoms and what areas of the kidney are involved. Here are some symptoms of lupus nephritis: Unexplained swelling in your feet, …

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Lupus Hair Loss and Folic Acid Hair Loss: Tips and Treatments

Are you losing some of your locks because of lupus? Hair loss isn’t usually listed among the core symptoms of lupus, but it does affect many people living with SLE (systemic lupus erythematosus) and discoid lupus. It may be caused by lupus itself, certain treatments for lupus, or other illnesses or health issues (such as thyroid problems or nutritional deficiencies), according to the National Resource Center on Lupus. How do PatientsLikeMe members manage it and try to protect their mane? How members manage hair loss A number of PatientsLikeMe members with lupus have mentioned hair loss in the forum, and some say that hair loss was among their first cluster of symptoms pointing to lupus or a health condition. (Join PatientsLikeMe or log in to see members reporting hair loss, its severity and treatments they’ve tried.) The same tips and products won’t work for everyone (and remember to check with your doctor before trying new supplements or treatments) — but here are a few pointers and perspectives from members who’ve had hair loss. “My hair has been falling out for 2 1/2 years. What’s helped me with it is coconut oil, hair vitamins (vitamin B, folic acid, biotin). This doesn’t stop it from falling out but it speeded up healthy hair …

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What’s New In Lupus Research & Treatments?

Keeping tabs on the latest info about lupus research is no easy task. So we’ve boiled down some highlights and trends in the world of lupus research and drug development — take a peek. Rising areas of research Stem cells – Initial studies have shown that mesenchymal stem cells (MSC) — a type of stem cell that lives in bone marrow, umbilical cord blood, and many other tissues — may suppress the inflammation associated with autoimmune disease, including systemic lupus erythematosus (SLE). An upcoming phase II clinical trial will take a closer look at the effectiveness and safety of MSC obtained from umbilical cords for the treatment of adults with SLE (check out this PatientsLikeMe guide to clinical trials to learn more about the phases and process for developing new treatments). Gut bacteria – Research has also shown something called gut microbiota dysbiosis or intestinal dysbiosis (an imbalance in the amounts and types of bacteria in the gut) in people with autoimmune diseases like lupus. A small new study published in February 2018, which observed both mice and humans, found that lupus may be linked to an altered and less diverse microbiota (a biological community of bacteria or other organisms) in the gut. The researchers called for more research on lupus and gut health. Biomarkers – SLE disease activity within the …

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