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?

Comment from: Trenam, 45-54 Female (Patient) Published: August 05

I was diagnosed with lupus in the summer of 2015. This was preceded by a severe case of double pneumonia in the spring of 2014, which caused thyroid disease and the abrupt onset of menopause. I had symptoms that I attributed to these illnesses, including debilitating fatigue, shortness of breath, sudden weight loss, sleep problems, and muscle and joint aches. I thought I had recovered after a few months, but then these symptoms began to worsen, and I also started experiencing cognitive difficulties (memory loss, inability to concentrate), pain in my abdomen, and chills/hot flashes beyond what you would expect from menopause. Diagnostically, I had a positive ANA, vitamin D deficiency, and elevated liver enzymes. I was tested for colitis, Graves' disease, lymphoma, you name it. After finding a good rheumatologist and gastroenterologist, I was diagnosed with lupus, autoimmune hepatitis, and subsequently alpha-1 antitrypsin deficiency. I was put on Plaquenil by my rheumatologist and 40 mg prednisone by the gastroenterologist. The prednisone caused only negative side effects and I was switched to ursodiol after five months. My other medications include Adderall for the fatigue, Sonata and Xanax for sleep, Opana for pain, and herbs and vitamins like milk thistle, vitamin B 12, vitamin C, and vitamin D. I have to meet with an ophthalmologist every six months due to risks associated with Plaquenil. I wish I could say I'm fine now, but the fatigue has only slightly improved and I have not been able to work for almost a year. Some relatively new additional symptoms include cramps in my calves, both while sleeping and awake; and severe, sudden pain in my right hip/groin and which is being evaluated for avascular necrosis. I hope this information is helpful to anyone else who may be suffering from the same illnesses or is trying to determine the cause of their suffering.

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Comment from: cupcake, 35-44 Female (Patient) Published: March 11

I was diagnosed with lupus in 2014. I woke up one morning with shortness of breath and my arms, hands, and legs were killing me, and I was beyond fatigued for 3 days and had fever. I take naproxen and prednisone.

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Comment from: Mary, 55-64 Female (Patient) Published: November 05

On vacation at about 12 years old I took a sulfa antibiotic for cold/flu. I developed ulcers in my mouth and then went on to have severe joint pain to the point that my mom and aunts had to carry me to the bathroom. I remained in bed and even unable to turn myself over or change positions without help and overwhelming joint pain. Years later I was diagnosed with SLE (systemic lupus erythematosus) and the episode with sulfa suggested as my first flare.

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Comment from: CoCoChanel, 25-34 Female (Patient) Published: July 30

I have not been diagnosed with lupus at this time. My ANA was negative but each time I have a sedimentation rate done, the number increases. Since January, I have been diagnosed with polyarthralgia (they say there is not enough inflammation for arthritis), fibromyalgia, seborrheic dermatitis, anemia, obstructive sleep apnea, tendonitis, fatigue, exhaustion, telogen effluvium and I strongly believe that I have costochondritis. My insomnia, depression and chronic fatigue are out of control right now. I am in pain all the time. After not being able to get out of bed for a few days, I finally went to the emergency room (ER). After talking to the doctor for 10 minutes, he told me that he thought I had lupus. I have seen 7 doctors since that ER visit and feel like no one is taking me seriously. At the onset, I thought that I had irritable bowel syndrome (IBS) or was (all of a sudden) lactose intolerant, then the aches and pains started. It has basically been a snowball since then. This started in January of 2013 and here I am, in July of 2014 with no real answers. Just an ever growing list of medications, doctor appointments and conditions. I am at my wits end!

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Patient Comments

Viewers share their comments

Lupus - Experience Question: Please describe your experience with lupus.
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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