Patient Comments: Lupus - Experience

Please describe your experience with lupus.

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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Comment from: Joann, 55-64 Female (Patient) Published: April 26

I'm 60 years old and I was diagnosed with lupus 31 years ago. It all started one morning when I was on my way to work. I developed a skin rash on my face, ears and arms. It itched like crazy. Afterward, I contacted my physician and I was referred to a dermatologist. A biopsy was done and it was clear that I had lupus. I was treated with many types to medication, including prednisone. I was very ill for years, and in and out of the hospital. It is in both of my kidneys, now I'm being treated with CellCept and prednisone. Otherwise, I feel great I'm a little slower now but my body doesn't ache much anymore. I'm still enjoying life and having a great time traveling.

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Comment from: Lisa74, 35-44 Female (Patient) Published: July 24

I am 43 years old and was first diagnosed with lupus when I was 19. I was lucky my doctor picked it up straight away and sent me to a specialist. Since the beginning the lupus has always manifested itself by reducing my kidney function. At 31 I needed a kidney transplant and so far everything is going well. The drugs to manage anti-rejection of the kidney have also reduced my lupus symptoms to nil. I live a wonderful life being able to work full time and spend time with my husband, family and friends. They have been there with me all the way. I hope that other sufferers look at my story and I wish them all the best in their fight. Keeping a positive attitude and being emotionally strong has been the best way to cope that I have found.

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Patient Comments

Viewers share their comments

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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