Patient Comments: Lupus - Experience

Please describe your experience with lupus.

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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Comment from: Do I have Lupus, 45-54 Female (Patient) Published: April 05

I was sent to a rheumatologist from my family doctor after several blood tests. Family doctor thought my numbers revealed Lupus. I was diagnosed from the rheumatologist with fibromyalgia several years ago. With many, many ups and downs in my health, I feel sick everyday and have been to my family doctor so many times. Nothing is helping.

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Comment from: Bug19, 35-44 Female (Patient) Published: November 26

I am a 40 year old female. I was diagnosed with SLE Lupus over 30 years ago. I have three children and many rough days, but some very good ones as well. I am always trying to find out more and more on the disease. I started reading up on it when my Aunt was diagnosed. But one year later I was then diagnosed. I have learned to live with the limitations. Some worse than others. I wish there was a cure for this. My boyfriend is trying to learn all he can about this as well. He has really been good with this. As have my two boys. I wish I had more family support but they choose to ignore this. :( I am going through a very rough patch right now with a crisis flare.

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Comment from: Kete, 25-34 Female (Patient) Published: May 02

I am 29 years old and was diagnosed with lupus 10 months ago after a series of lab tests. It started with just a simple fatigue, fever, joint pains, mouth sores, lesions, and redness on my cheeks when exposed under the sun. I thought it was just an ordinary flu but it get worst. I was prescribed to take hydroxychloroquine and prednisone. Since then the symptoms lessen but sometimes it persists when I can't avoid sun exposure. Now, I use sunblock with high SPF to protect my skin.

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Comment from: natalie, 35-44 Female (Patient) Published: October 11

I've been sick for a year now. Joint pain and swelling. Continuous hair loss. Terrible fatigue. Low grade fever for weeks at a time, nausea. Started having chest pains, feet and ankle swelling had to go on Lasix and potassium. Gained 40lbs. I think that was because I was getting depressed because I have not yet been diagnosed with anything. Dry eyes, had to put drops in them all the time. Purple/bluish toes they are always cold. Then i had tachycardia and abnormal heartbeat. Then got Raynaud's disease on my hand. My pcp said to call my rheumatologists and I am going on Monday. It takes me 2hrs just to get up and be out of pain enough to go anywhere, so I will be getting up at 6am for an 8:30am appt. I try to make appt. late in afternoon but that's all they had.

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Comment from: shripad, 25-34 Male (Patient) Published: August 02

I am suffering from lupus from last 2 years. I had been through a high intensity of pain and had gone through 100 days in hospital. I have been taking steroids for a year and so, which has resulted in my weight gain (14kg) and a bulky round face. My doses are lowered down now and I am taking anti inflammatory, hydrochloroquin, calcium supplements and some NSAIDS, but I am not happy with the physical state I am going through. I am not happy with life.

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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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