Patient Comments: Lupus - Experience

Please describe your experience with lupus.

Comment from: LT, 45-54 Female (Patient) Published: April 20

I had dry skin for years; the only lotion that helps it completely go away is Amlactin lotion. In my late thirties I would miss work because I felt ill, which was probably a flare, but I did not know what the cause was. I am now in my mid-fifties. Last October I was referred to my dermatologist because my entire back looks like I have a sunburn and had for several months. When I saw the doctor, I told her that I felt lousy, so when she biopsied a small sample of tissue from my back, she had it tested for lupus and found out that I have lupus erythematosus tumidus. I cross-checked the NIH (National Institute of Health) for articles on Prevacid (which is used for an acidic stomach). I had been taking Prevacid since age 33, and yes, that drug can trigger lupus. I discontinued the Prevacid by changing to Tagamet for the stomach acid. I am planning to have a skin biopsy every 9 months to see if the lupus goes into remission, which is possible because I stopped the Prevacid. I am ANA-negative. Twice, however, I have had periods of very sore muscles in my back, arms, neck and shoulders, once for 2 days and recently for 5 days. I am glad to see everyone's comments and wish everyone the best health! I don't remember where I saw this, but amlodipine bisulfate (brand name Norvasc) can also cause lupus (according to the NIH).

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Comment from: Zita NZ, 45-54 Female (Patient) Published: July 29

Nearly 30 years ago, during labor, the doctor made the decision to break my tailbone as my baby was stuck. I remember hearing a crack and said I think my pelvis just broke, he said he just shifted my tailbone. Well, the next 6 months were spent either sitting on one leg or on a ring cushion. Ever since I struggle sitting on hard chairs. I had a lot of pain flying from New Zealand to London in May. It is nearly 30 years and it still hurts. My specialist said it can be removed for NZD 13000. I think I may end up with more problems as I hear of the high chance of infection which can be ongoing. I believe once a tailbone is broken it is always going to be a pain in the butt. I wonder if anyone else suffers from severe back pain. Oh well, life goes on.

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Comment from: scared68, 65-74 Female (Patient) Published: May 24

My mom is 68, vibrant, energetic, full of life, and a busy bee. Three months ago she got sick which led almost to her demise and the abdominal aortic aneurysm was discovered. Four weeks ago, she had the surgery to repair, and she came out of recovery nauseated and stomach feeling as if she was going to have a severe bowel movement. She has had another stay in the hospital for 4 days, seen a gastroenterologist, her family doctor and it's been discovered she has an ulcer at the point where the esophagus meets the stomach and among this there were 9 places biopsied in areas in her stomach and throat. She is at the emergency room again with vomiting and abdominal pain. Seems all her symptoms are on the wrong side of the discovery. It's really odd that none of these were bothering her before the surgery.

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Comment from: marlyn, 75 or over Female (Patient) Published: March 23

My son received plasma exchange for his encephalopathy and it worked well. But that was 16 months ago and he is still left with some brain damage.

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Comment from: sherry, 25-34 Female (Patient) Published: November 13

I have just been diagnosed with PBC (primary biliary cirrhosis). My problems started with an initial diagnosis of diverticulitis. I had extreme pain in the right side, but also pain in my back on both sides. The first round of antibiotics didn't work so I got a second round, then a third. Then they did a colonoscopy which confirmed the diverticulitis. I still had pain and diarrhea that went on for 3 months and they finally did a stool sample which showed that I had Clostridium difficile. After 14 days of Flagyl, I finally started feeling better. I lost 20 lb. rapidly during this time and am still losing. Blood tests showed abnormal liver enzymes and kidney levels. I had bloodwork every month with the last time being extensive and showed the PBC. I'm taking ursodiol 500 mg twice a day. Most recently I had a bladder infection 2 weeks ago and just called the doctor because I have another one. I only have one kidney so I am very concerned that the treatment of the PBC may cause damage to my kidney.

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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 your lupus symptoms and signs improved with dietary changes?
Lupus - Prognosis Question: What is your lupus prognosis?

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