Patient Comments: Lupus - Experience

Please describe your experience with lupus.

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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Comment from: rjv1967, 35-44 Female (Patient) Published: June 02

I am a 43 year old woman and Lupus and RA run in my family I have been bounced from specialist to specialist since 2000. They even disagree with each other first saying it was RA then Fibro now with a positive ANA and elevated sed rate they are treating me for Lupus. I feel like my story is so much like everyone else's on the forum. It is so frustrating and so depressing. At least now I know I'm not alone.

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Comment from: lonely and afraid, 55-64 Female (Patient) Published: May 03

I just got diagnosed 2 days ago. For so long, I have felt not right, tired, and just not well. Everyone thought I was crazy. Doctors just kept ordering up pills with no real answers. I am scared, unknowledgeable, looking everywhere for answers, wondering what will happen. My mind is on a continuous merry go round.

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Comment from: Boipelo, 35-44 Female (Caregiver) Published: April 28

I am a 25 years old lady who recently just lost her mother due to lupus, she started having all the symptoms in 2009, she had swollen feet and face, pain joints, fatigue, pimples all over her body, skin problem, nails cracking and changing to be black, and the doctor couldn't diagnose her by then until the last week she was passed on this year Feb. I feel like if the doctors would have acted quickly she would still be alive.

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Comment from: Ladyj091569, 35-44 Female (Patient) Published: April 13

I am a 41 year old woman that has been suffering with lupus for about 13 years now and now I am finding it so hard to even get out of bed in the mornings because of all the pain that I feel in my body. I do also suffer with depression, nocturnal grand mall seizures, rash, ulcerations, and now possibly crohn's along with a lot of other conditions that this has done to me. I feel like I'm in this battle all by myself and I really don't know what to do about all of this. This winter has been the worse for me physically and mentally and I am looking for some kind of support from other lupus patient's because, I can't battle this disease by myself anymore. Please help! Thank You!

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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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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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