Patient Comments: Lupus - Experience

Please describe your experience with lupus.

Comment from: Precious stone, 25-34 Female (Patient) Published: December 20

For over eight months I suffered severe pains, stiffness and swelling of my joints. I started with Voltaren but it wasn't any good, until I saw a consultant who said it was arthritis. I was given methotrexate and there was much relief until I noticed my hair falling off. I went back to the doctor and he asked me to discontinue and the pains came back but this time much more than before. Each night I was injected with Voltaren and pentazocine so I can sleep, until two weeks ago I travelled to India and there I was told I have lupus. Presently am on CellCept and some other drugs I just hope for them to work.

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Comment from: juliem, 35-44 Female (Patient) Published: October 28

My diagnosis happened just after my fifth miscarriage (at the age of 30). It was only at that stage that the doctors thought that the miscarriages were down to more than just "bad luck". Symptoms which existed before that time included bouts of severe tiredness and various digestive disorders. Since my diagnosis I have been taking 75mg Aspirin every day, however that is no longer effective at stopping muscular pain, particularly in my arms with painful tingling sensations in my fingers. The rosacea has progressed over time, so it is difficult finding make-up which can give normal skin tone. I tend to be prone to chest infections due to predisposition to lung disorders.

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Comment from: Carol, 55-64 Female (Patient) Published: August 09

I was diagnosed with Lupus in 1999. I have taken Hydroxychloriquine since then. I have had no symptoms in 11 years. I recently moved to Florida and have a new Doctor, well after Blood Tests, they tell me I am in Remission and have no signs of Lupus, that it is gone and I should stop taking the meds. For right now I am still taking the meds, scared to stop. Me first Doctor said no cure for Lupus that I will always have it, but it was low key, but new doctor says it is gone! Happy Days I hope, but I am scared!

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Comment from: lucy kiogora, 35-44 Female (Patient) Published: April 23

I was diagnosed with lupus last year, 2013. I had trickling while walking, butterfly rashes on my face, palms of my hands were dark with sores, ulcers in my nose, painful muscles, fatigue and joint pains. I am on prednisolone drugs. This condition rely destabilized my life but now I am more informed on the same.

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Comment from: maano, 19-24 Female (Patient) Published: April 14

I am 21 years old and a medical student suffering from SLE (systemic lupus erythematosus). Two years back in December 2012 I was attacked by Stevens-Johnson syndrome. After recovering from this, SLE assaulted me, and since then am suffering from it. At this time half of my kidney is damaged. Doctor has prescribed me Cellcept for kidney in addition to my other dose for SLE.

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Comment from: sfruth, 65-74 Female (Patient) Published: February 28

I am a registered nurse who contracted norovirus on a cruise. I quickly developed sleeping in my hands and fingers, and joint overgrowth and stiffness. A year went by, and a reduction in force at my job resulted in an assignment to a different position which involved a change in work hours and a much higher level of stress. Symptoms exacerbated until my doctor ordered some tests, and I had an extremely elevated ANA. Referral to a rheumatologist led to diagnosis of lupus 1 1/2 years after my initial symptoms.

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Comment from: mytiger, 55-64 Female (Patient) Published: October 08

I have just been diagnosed with lupus. I have had fibromyalgia for 15-20 years diagnosed by my rheumatologist with chronic fatigue and all over painful joints and muscles. I also was diagnosed with neuropathy of the feet and degenerative disc and joint disease. Now my hands and fingers hurt as well as back and hips and my eyesight is getting bad. My skin started looking bad with bruising and spots and rash so my doctor tested me for lupus.

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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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