Patient Comments: Lupus - Symptoms

The symptoms of lupus can vary greatly from patient to patient. What were your symptoms at the onset of your disease?

Published: July 18

First symptom was falling hair, which I ignored as being due to shampooing with hard water. Subsequent symptoms started with pain in the joints of fingers & wrist, especially early morning, would become better in about 2 hrs after waking up.

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Published: July 16

I had a really low white blood cell count at a recent trip to the hospital. I had a butterfly-like rash on my face and then a really bad rash on my body. The doctors asked me if I had ever been tested for lupus, and of course I said no. I told them that my regular doctor was treating me for rheumatoid arthritis. They said that should have been a red flag because I was only 26 at the time. I have sores that I get on my tongue and my throat all of the time and my joints in my wrists and ankles swell a lot. They ran a few tests while I was in the hospital and came to the conclusion of systemic Lupus.

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Published: July 14

After having Raynaud's Syndrome and finding out that my aunt and mother both almost died from blood clots (thought from birth control pills) I asked my gyn Dr. to test me for blood issues. The doctor called 2 days later telling me to see a blood specialist because my ANA levels were very high and they suspect Lupus. A lot of things make more sense like the dark patches on my face that I have had for 2 years that no doctor could explain and my occasional tiredness for no apparent reason.

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Published: June 30

I was diagnosed with lupus through a punch biopsy on dense skin patches on my upper arms. I have treated with Plaquenil since my diagnosis. With continued testing, it was determined I had progressed to systemic lupus. My treatment did not change, however I've noticed a marked decrease in my memory. At first it was random, but now is becoming alarming. I have read that dementia can be caused by Lupus. .

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Published: June 24

I started with the low grade fevers in the night, then the pain in my chest, joints. Became very light sensitive. Drying of the eyes and complete fatigue, it is only recently after a hospital visit that I started my treatment for the symptoms.

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Published: June 24

I am 34 years old and I have had Lupus for 10 years. I was first diagnosed with Lupus after having strep throat three times and being treated with antibiotic and it wouldn't go away. I went to a Rheumatologist and we began testing, something I have learned about Lupus is test results can vary so always get them repeated and get a second opinion if need be.

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Published: June 19

I had hair loss, discovered by my hair stylist who suggested I see a dermatologist. He treated me for what he believed was Alopecia Areata for the first year, during which my hair slowly filled in with Cortizone shots to the affected scalp area. Then I discovered a rash on a small area on top of my forearm. Once again my hair stylist suggested I see a dermatologist. He saw the rash on my forearm & discovered small affected areas on my face I hadn't noticed. Seeing the rash & recalling the Alopecia treatment, my dermatologist diagnosed me with Lupus & ran a standard test confirming it & advised me to follow up with my primary physician. I don't know what would have happened if it weren't for my hair stylist life-saving suggestions and a dermatologist willing to look into my symptoms as more than just a routine rash treatment.

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Published: June 19

Fatigue, migraines, Raynaud syndrome, arthritis. Then I developed low grade fever usually at night. After a few years of that, nerve problems resulting in peripheral neuropathy and the exhaustion became overwhelming. Also, nausea.

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Lupus - Experience Question: Please describe your experience with lupus.
Lupus - Treatment Question: What kinds of treatment have you received for your systemic lupus?

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