Patient Comments: Lupus - Experience

Please describe your experience with lupus.

Comment from: janet, 45-54 Female (Patient) Published: April 12

Initially,I was diagnosed with chrohns disease and then was put on prednisone and a year later seemed to be in a remission of sorts. I noticed that the joints of my thumbs and hips hurt alot and that I had these raised itchy patches on my lower arm. I had them tested and was told I also had Skin Lupus. Over the years I have noticed that when I have a flare up that More joints are affected and I have pain in my chest and am generally tired all the time. Now I have signifigant hearing loss and eyesight loss within the last 11 months and I believe that the onset of this last bout has damaged some nerves as I do not think clearly, have a steady white noise in my head and both eyes and eyes have significant change within 4 months. I now have bifocals and have to get hearing aids. from having simple reading glassed and great hearing I can tell you I feel like I am losing myself bit by bit. The light semsitivity is awful right now as is the concentration level. BTW, I am 49 and lead an active normal life but this has really knocked me down. I am using azothioprine but cannot use NSAIDS because of the crohn's.

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Comment from: tearose, 45-54 Female (Patient) Published: March 07

I have constant pain all over and in the chest, extreme fatigue, night sweats, memory loss, rashes, recurring bladder infections, sores around mouth and nose and tendonitis in both wrists and shoulder requiring operations. Diagnosed with lupus almost 7 years now.

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Comment from: melissa, Female (Patient) Published: February 04

I started having a lot of problems in my joints and muscles. After cleaning a room in my house I would not be able to walk good for about 3 or 4 days. Even now I am unable to do normal house hold chores without hurting. It has also really messed with my breathing over the past few months it is really hard to breath at times for very long period of times I must sleep sitting up to. I can't catch my breath I use a nebulizer at night and during the day I must use inhaler 2 to 3 times daily I also have used Pred. at night to help my breathing and I am 37 years old.

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Comment from: lupus40miami, 35-44 Female (Patient) Published: February 02

I was first diagnosed with Lupus by an allergist. I had a rash all over my body especially my face that would not go away, joint pain and swelling, exhaustion and overall malaise. I have been on Plaquenil for 5 months now and it has helped but I continue to have exhaustion, muscular aches and pains and now I've developed tachycardia needing a cardiologist evaluation. I've been diagnosed with fibromyalgia as well. There are days that I wish I could just stay in bed. I lost my job over Lupus.

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Comment from: CaptainG, 55-64 Male (Patient) Published: January 24

First thing, I am a male and like most people who thought Lupus was a chic affliction I never thought of it as something I would have. It started at about 8 or 9 years old, swollen glands, unexplained fevers and night sweats, feeling drained and mentally foggy. By the time I was 13 full symptoms appeared: chest pains, joint pains, fatigue, and mental confusion, flu like bouts that lasted a month or more. These symptoms have stayed a part of my life up till now at 57.

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Comment from: zoe, 25-34 (Patient) Published: February 16

I was 23 when I found out I had SLE and I couldn't understand what it was but all I knew my joints were painful and my whole body was in pain. Then I was swelling up my hands I couldn't move from the bed and I was so helpless and I thought I was going to die. I lost so much of weight because I couldn't eat and now I'm still battling with breathing problem and sleeping because I can't sleep flat on the bed, I need a big pillow to be able to sleep.

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Comment from: julia, 65-74 Female (Patient) Published: January 24

When my hands are cold. My finger nails turn black.

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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?

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