Patient Comments: Lupus - Experience

Please describe your experience with lupus.

Comment from: carolkirkoconnor@yah, 55-64 Female (Patient) Published: January 13

I think I have lupus for 15 years or more, but not diagnosed till 2012. I always got sick in the fall, a long episode of colds that took forever to get over (immune deficient). I am a registered nurse and had to leave 3 different great jobs due to relentless fatigue. I am 59 now and feel like I lost 15 years of my life, but now I have a diagnosis. I finally ended up with confusion, muscle weakness, pain all over, mouth lesions, and a huge abscess on my arm. I had lupus lesions in my brain and on my skin. I ended up in the burn unit for months, on steroids and chemotherapy, 4 months in the hospital, 1 month at a physiotherapy rehab hospital. I have been home almost 2 years, on CellCept and Plaquenil. Still have fatigue, joint and muscle pain. I want to get back to my former pace and endurance, but I remind myself I am alive. I have a great rheumatologist, my doctors saved my life. I was perfectly functional in December 2011, then by January, a walking zombie, incoherent and in pain and not able to eat or drink. Every lupus patient needs people around them who know who they really are, to pick up on the physical and mental changes that show up. It took 2 weeks before the lupus diagnosis, and I kept deteriorating. Finally once we had the diagnosis, I had to have platelet apheresis before being sent to the burn unit, to care for the skin lesions. This is a tough disease to recognize and diagnose. I had been told I had fibromyalgia, chronic pain, restless leg syndrome, depression and anxiety. IF you have these symptoms, try rheumatology and test for lupus. Don't be put off if you think something more is wrong. I am finally on a treatment plan. I still have days of fatigue, and it takes longer to get over colds etc., but so much better than before. I am not crazy or lazy, just a little pooped now and then.

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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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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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