Living with Lupus

Managing a Lupus Flare – Advice From Experts

Comments (5)
  1. Margaret latocha says:

    I am so tired of not being able to find a true lupus doctor that understands his patient and the disease

    1. Kylie says:

      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.

  2. Patty says:

    I concur

  3. Lori Gumm says:

    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.

  4. Gail Eglit says:

    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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