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Old 10-23-2007, 03:43 AM   #1
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Question Help do I have the symptoms of Lupus?

hello i am also new this is my first message. I am 47 a mother of 2 I have been ill for years off and on. Yet no matter how many times i go the doctor he never seems to find anything, all the test are fine. the problem is i am constantly suffering from fatigue, joint pains, pains under my feet that make it difficult to get out of bed, intestinal problems and now finely a rash on both arms. I do not have a butterfly rash and no loss of hair even though my scalp tends to itch easily. I have noticed that i do not tolerate the sun as i use to i dont like the light and at times my skin gets bumps on it. does anyone else have these symptoms? Can one have Lupus even if the bloods are negative? I hope someone can answer me as i am now getting desperate and its hard to be at work. Yours hopefully Sandyboop

 
Old 10-23-2007, 06:34 AM   #2
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Re: Help do I have the symptoms of Lupus?

Hi & welcome. I had years of nonscarring & nondepigmenting rashes on my arms & torso, plus problems similar to your list. I was finallt diagnosed with subacute cutaneous lupus erythematosus (SCLE), which is seen as an intermediate form of lupus, falling somewhere between DLE (discoid lupus erythematosus) and SLE (systemic lupus erythematosus, which is the "classic" kind of lupus).

MY ANA stayed negative, which happens, I was told, in roughly 30% of people with SCLE. In SLE, in contrast, ANA is thought to be positive roughly 95% or more of the time.

I eventually tested positive for anti-Ro, which is the antibody most commonly seen in this "subset" of SLE. Most people with SCLE are horribly photosensitive, which I certainly became, but over a period of years.

There are two forms of SCLE-specific rashes. Neither forms tend to itchs, scar or depigment. The form I had is called annular, meaning targetlike. In its immature form, it can look like only small red raised welts. In its mature form, lesions are circles with clear centers, which eventually expand outwards and lose circularity, then fade. My rashes were limited to my upper arms & torso, but it's possible to have them on other areas.

The second kind of SCLE rash is called papulosquamous (or psoriasiform). Instead of circles, it consists of much smaller lesions, usually closely spaced.

I had fatigue, joint & back pain, severe GI problems (20+ years), migraines, urinary problems, hair loss, sciatica, and anemia. My rashes were the last problem to arrive, actually. Much to my frustration, my local drs. (GP's, dermies, rheumies, etc.) apparently had never heard of this kind of lupus. Looking back, I think they were thrown off my my negative ANA, and lack of facial rashes or scarring rashes. Plus, SCLE was only defined in 1978, so maybe they'd just not kept up on lupus.

I'm (obviously) only a patient. That said, in your shoes, I think I'd try to see a dermatologist or rheumatologist, instead of a general practicioner. Have you seen either?

I hope there's something here that helps some, and that you post more when you can. FYI, other people here have had non-facial rashes, too, & hopefully they'll also post back. Bye for now, with my best wishes, Vee

 
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Old 10-23-2007, 08:53 AM   #3
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Re: Help do I have the symptoms of Lupus?

Thank you vee i was so glad to get a response. i have never heard of SCLE but then i did not know too much about Lupus either. I am going to a new doctor tomorrow and hope to be sent further from there. I was interesting that you also have had GI problems for 20+ years. My rash is very new but at this stage dont know if its connected as it is itchy. Thinking back though i have had other small rashes like small dots with clear liquid in (sound awful i know!) I am worried that the doctors over here dont know so much about this lupus thing. I live in Norway. anyhow thanks a lot for your response. much appreciated Sandyboop

 
Old 10-23-2007, 08:55 AM   #4
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Re: Help do I have the symptoms of Lupus?

Thank you vee i was so glad to get a response. i have never heard of SCLE but then i did not know too much about Lupus either. I am going to a new doctor tomorrow and hope to be sent further from there. It was interesting that you also have had GI problems for 20+ years. My rash is very new but at this stage don`t know if its connected as it is itchy. Thinking back though i have had other small rashes like small dots with clear liquid in (sound awful i know!) I am worried that the doctors over here dont know so much about this lupus thing. I live in Norway. anyhow thanks a lot for your response. much appreciated Sandyboop

 
Old 10-23-2007, 08:58 AM   #5
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Re: Help do I have the symptoms of Lupus?

Quote:
Originally Posted by sandyboop View Post
Thank you vee i was so glad to get a response. i have never heard of SCLE but then i did not know too much about Lupus either. I am going to a new doctor tomorrow and hope to be sent further from there. It was interesting that you also have had GI problems for 20+ years. My rash is very new but at this stage don`t know if its connected as it is itchy. Thinking back though i have had other small rashes like small dots with clear liquid in (sound awful i know!) I am worried that the doctors over here dont know so much about this lupus thing. I live in Norway. anyhow thanks a lot for your response. much appreciated Sandyboop

 
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