Patient Comments: Lupus - Experience

Please describe your experience with lupus.

Comment from: Sherry, 45-54 Female (Patient) Published: November 16

I was diagnosed on September 6, 2007 at the age of 43 by an internist. I started getting sick feeling on July 1, 2007 after moving. My joints swelled up and I was in extreme pain. At first I put it to moving too much too fast but as time progressed, my symptoms got much worse including sores in my hair and mouth and nose. I was not able to get out of bed because of pain and fatigue. I finally went to the family doctor and said "You better help me because I'm dying!!" I was in the internist's office for 10 minutes and he said I had lupus. He sent me across the street to the hospital for iv prednisone. Within the first five minutes of receiving that, I started to feel better. Four years later, the azathioprine slowly stopped working; I have had a constant flare for four months. I have now been put on cellcept (which is very expensive but I have group coverage of 80%) and four days later, I am almost pain free and I have energy. On the third day I had energy for the first time in what seemed like forever. I was able to make dinner, unload the countertop dishwasher and reload it, hand wash dishes that I hadn't had energy to do for a week, sorted and did laundry and cleaned my kitchen. I don't feel like a lazy person anymore and I can move relatively pain free. Today was my first day at work since starting these meds and I got home and don't feel so exhausted that I can't do anything. I love it!!

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Comment from: Cheyluv, 19-24 Female (Patient) Published: February 07

I am a 23-year-old woman. I was 16 years old when, out of nowhere, I had all the symptoms at once. I was stuck in my bed, couldn't move because of the joint pain, swelling, and unbelievable fatigue. I also had a small rash. The next year, I was diagnosed and began taking hydroxychloroquine, which I am still taking now. I have not had a "flare" since four years ago before my first son. I was blessed with two boys. The fatigue is still enormous. I know it's not just because I have two kids. The only concern is a recent check of my platelet count that shows it is decreasing every time. The doctor says it's not too low, but he will keep an eye on it. I just try to take care of myself and hope things don't get worse. Most days I wish I could have more energy, but I guess in some ways I'm lucky.

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Comment from: cgig, 35-44 Female (Patient) Published: February 02

My symptoms started very abruptly at the age of 29. I actually had a very high fever with ankle and knee joints swollen so bad that I could not walk, and I had the rash on my face. I was very lucky in that my primary doctor diagnosed me on the spot and sent me to a specialist right away. I have had ups and downs with lupus over the years, but I have managed to balance it with Plaquenil, exercise and diet controls. The biggest thing to remember is not to let lupus live your life -- you have to learn how to live with lupus.

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Comment from: sugarboo103, 35-44 Female (Patient) Published: January 28

My symptoms started at about the age of 13, I started having protein in my urine, aches, pain, swelling in my joints and then the rash around my eyes and cheeks. It took countless doctors before I was finally diagnosed at the age of 21. Since then the symptoms have gotten progressively worse. Mostly fatigue, swelling in the joints mostly my feet, headaches and I've also had lupus related hepatitis. Actually the only time I feel better is when I'm pregnant, which most doctors say you shouldn't have children. I've been blessed with 4. I don't get a lot of support from my family because there are no outward signs of the illness. Most doctors are the same too. Luckily I have found a good doctor that listens and has prescribed me a new medicine. Hopefully it works.

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Comment from: Spotohunny, 45-54 Female (Patient) Published: May 02

I have what doctors call lupus. The pain is always worse with medication. My arrogant young doctor claims he never heard of such a thing. Why would medication cause me more pain than the disease!

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Comment from: glianneeunice, 25-34 Female (Patient) Published: May 20

I am a 30-year-old woman. I was 10 years old when am diagnose with SLE Nephritis with edema. I was stuck in my bed, couldn't move because of the joint pain, had swelling, fatigue, rashes, and the trademark butterfly sign on my face. I've had lupus for 20 years. Since being diagnosed, I've been in and out of the hospital. I also undergo chemotherapy. I have two children, ages 11 and 6. I'm currently taking several medications but am still not feeling work. My doctor told me that my lupus must be flaring.

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Patient Comments

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Lupus - Symptoms Question: The symptoms of lupus can vary greatly from patient to patient. What were your symptoms at the onset of your disease?
Lupus - Treatment Question: What kinds of treatment have you received for your systemic lupus?
Lupus - Diet Question: Have dietary changes helped with your lupus symptoms and signs?
Lupus - Prognosis Question: Please describe your lupus prognosis.

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