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Managing a Lupus Flare – Advice From Experts

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Because they are unpredictable, a lupus flare can be frustrating and frightening.

The onset of symptoms, ranging from rashes and fatigue to serious joint pain and risk of organ damage, can seem unmanageable. A lupus flare contrast periods of time with no symptoms – known as remissions, or more accurately “quiescence.” While a severe lupus flare requires immediate medical attention, a mild or moderate lupus flare can be managed at home.

LupusCorner gathered insights from some top patient advocates and experts about lupus flares

When you are in the middle of a lupus flare, what can you do to manage the symptoms?

Sara Gorman

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DespiteLupus

“During a flare, prioritize your activities, and scale back on anything that doesn’t make the top of the list. Remember – this isn’t permanent! This is just until your disease activity lessens and you are flare free. Focus on today, and delegate what you can. You’d be surprised how many people are willing to help, if you task them with something specific.”

Marisa Zeppieri

lupuschick_portrait

LupusChick.com

“In the middle of a flare, I concentrate on sleeping as much as realistically possible with the demands of life, focus on ramping up my intake of healing foods such as bone broth, probiotics, and anti-inflammatory food. I also try to keep a journal to keep track of everyday. And most of all, though it is hard, I try not to stress. I keep in mind that I have been through awful flares before and they have resolved in time. This helps keep my stress levels in check.”

MarlaJan Wexler

luckfupus_portrait

LuckFupus.com

The most important thing during a flare is to listen to your body; if your body is telling you to rest, then it is critical to give your body the rest it needs so you can recover. Pushing yourself makes the symptoms more prominent, and the flare will last longer.”

Comments (5)

5 thoughts on “Managing a Lupus Flare – Advice From Experts

    1. It took me over ten years to find my current rhuematologist. It took me so much disease progression, and heartache to even have anyone listen. I saw over 30 doctors. I wasn’t even 25 yet. At 18, I was first diagnosed with Lupus. I began treatment and started doing alright- until I moved cities. I got another referral to a different rhuematologist, she completely denied the Lupus and diagnosed me with fibromyalgia and took me off my meds. I spiraled out of control. I had started to develop lesions on my face. It was biopsied by a dermatologist whom confirmed the diagnosis as Discoid Lupus, but completely denied that I could possibly have Systemic Lupus because.. and I quote: “It’s rare to see both.” Rare, but not impossible. I got a second opinion from another rhuematologist, who knew the doctor I saw that diagnosed me with fibromyalgia. He didn’t even do a physical exam, or blood work. I chatted with him no longer than ten minutes before he dismissed me, saying “I know Kathy, she’s a great doctor!” At that time, I gave up. Deeply depressed, with a huge lesion on my forehead, I saw my primary care physician for something completely unrelated when she wanted to refer me to someone hours away. I couldn’t. I couldn’t take the heartbreak anymore. Everytime I walked out of a clinic without an acceptable answer, let alone any sort of treatment, I wouldn’t even be able to get out of bed. I would question God, wonder why he would not only give me such a disease, but have no one believe me about it- even after I had already been diagnosed, after I had blood tests and biopsies that supported the diagnosis. My primary care referred me anyway. Even though I told her no. It changed my life. I met the best doctor I’ve ever known. She brought me from the deepest pit of dispair into the light of hope. She listens, cares- and ended up moving to a clinic 20 minutes from my house.
      My point being, don’t lose hope. As a Lupus warrior, hope is all we have. You have to learn to be your own advocate. Go get a second (or third or fourth or fifth) opinion. Sometimes that’s what saves us.

  1. I have now been diagnosed with steroid induced diabetes and steroid induced liver disease. The hardest part of that is that when I am in a flair typically the only thing that words is steroids. So, I still need to take them, but yet I shouldn’t because of the other two diseases they have caused in my body. My doc is amazing, and has started having me take the steroids in a longer period of time so less goes in my body at one time. But still it is one of those catch 22 things of lupus.
    I was diagnosed 13 years ago, however the doctors think I have been dealing with it since I was about 15 years old. I am a mom of 3 amazing kids and one seriously awesome grandson. I am also a writer. Lupus has definaately affected my life, but trying to have as positive an attitude as you can helps on those days when it seems like life will never be normal or pain free again.

  2. I do not have Lupus. I have Primary Sjogren’s Syndrome, SS-A. Sjogrens Syndrome is much more than dry eyes and mouth. The symptoms, organ damage, and treatment are normally the same as Lupus. I often follow Lupus articles and support groups.

    I suffered for years before my sister diagnosed me. I had 10 years of chronic parotid gland infections. I lost my voice for 4 months before we finally learned I had candida on my vocal cords. I often had severe bronchitis and sinus infections. I was always fatigued to the point that others thought I was just lazy. I talked my GYN into testing for SS during other routine blood work. I was diagnosed in 2011.

    My PCP in NY was wonderful. I was not thrilled with my Rheumatologist. I moved to SC three years ago. I was fortunate to find wonderful doctors who listen. I’m doing okay these days.

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