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Forum Name: Rheumatology Topics

Question: Systemic Lupus Erythematosus


 frustratedx1000 - Tue Aug 10, 2010 1:11 am

I have ulcerative colitis, and about the time i was experiencing a flare up, i noticed this weird rash on my face, which the ER doctor called a butterfly rash. I was also having episodes of Raynaud's Phenomenon on my fingers and toes. Along with the butterfly rash on my face i would experience a blotchy rash on my legs after experience with heat, whether it be from driving in my car or taking a hot shower, the rash wasn't raised or itchy but it lasted anywhere between 15 mins- three or four days. I was also experiencing joint/muscle aches. Naturally, after i got my colitis under control i checked out these symptoms and i was tested for lupus but it was negative so im stuck but i also have other symptoms



malar rash
confusion, i have a hard time remembering names, expressing thoughts clearly, lately i have even been stuttering
photosensitivity (severe)
mouth sores on the inside of my cheeks
nose sores
severe muscles and joint pain with swelling, redness, and warm to the touch
chronic headaches
severe fatigue
bad sinuses
dizziness
anxiety extreme!!!
depression
hair loss
raynauds phenomenon
chronic diarrhea ( but thats probably the colitis)

I just would like to know if it could be just not showing up in the test and if it can appear at a later date, i am very frustrated
 Faye Lang, RN, MSW - Mon Aug 23, 2010 9:52 pm

Hi -

Making the diagnosis of any form of lupus is very difficult, as signs and symptoms vary so much from person to person. The Lupus Foundation has said that the term "lupus" may actually include as many as 200 different forms of this type of autoimmune disease because of that variability.

The diagnosis of lupus is generally made clinically, that is, based on the symptoms the person is experiencing. There is really no hard and fast test for lupus. An elevated ANA means there is inflammation in the body; persons with lupus may or may not have an elevated ANA, or the ANA may convert to positive well after the diagnosis is made. Positive ANAs may also convert to negative when the inflammation is controlled. The diagnosis is usually made by a Rheumatologist.

The American College of Rheumatology criteria for the diagnosis of lupus recommend that the person experience 4 or more of the following (although the diagnosis can be made with fewer than 4):

Malar rash on face
Discoid rash, which is raised, scaly patches anywhere on the skin
Sun-related rash, which appears after exposure to sunlight
Joint pain and swelling in 2 or more joints, at any time
Swelling of the linings around the heart or lungs
Kidney disease
Neurological disorder, as seizures, psychosis, memory issues
Low blood counts, including red blood cells, white blood cells or platelets
Positive ANA
Other positive tests, as double-stranded anti-DNA, anti-Sm test, anti-phospholipid antibody test, and/or false-positive syphilis test
Other lab tests, which may include an elevated erythrocyte sedimentation rate, kidney and liver function tests and urinalysis.

Oral sores, fatigue, headache, hair loss and Raynaud's Phenomenon are known to occur with lupus.

Although it's impossible for a diagnosis to be made or suggested in this type of forum, because you do appear to have several of the symptoms known to be consistent with lupus, I encourage you to see a rheumatologist for evaluation.

I wish you the very best of luck.
 Faye Lang, RN, MSW - Mon Aug 23, 2010 9:53 pm

Hi -

Making the diagnosis of any form of lupus is very difficult, as signs and symptoms vary so much from person to person. The Lupus Foundation has said that the term "lupus" may actually include as many as 200 different forms of this type of autoimmune disease because of that variability.

The diagnosis of lupus is generally made clinically, that is, based on the symptoms the person is experiencing. There is really no hard and fast test for lupus. An elevated ANA means there is inflammation in the body; persons with lupus may or may not have an elevated ANA, or the ANA may convert to positive well after the diagnosis is made. Positive ANAs may also convert to negative when the inflammation is controlled. The diagnosis is usually made by a Rheumatologist.

The American College of Rheumatology criteria for the diagnosis of lupus recommend that the person experience 4 or more of the following (although the diagnosis can be made with fewer than 4):

Malar rash on face
Discoid rash, which is raised, scaly patches anywhere on the skin
Sun-related rash, which appears after exposure to sunlight
Joint pain and swelling in 2 or more joints, at any time
Swelling of the linings around the heart or lungs
Kidney disease
Neurological disorder, as seizures, psychosis, memory issues
Low blood counts, including red blood cells, white blood cells or platelets
Positive ANA
Other positive tests, as double-stranded anti-DNA, anti-Sm test, anti-phospholipid antibody test, and/or false-positive syphilis test
Other lab tests, which may include an elevated erythrocyte sedimentation rate, kidney and liver function tests and urinalysis.

Oral sores, fatigue, headache, hair loss and Raynaud's Phenomenon are known to occur with lupus.

Although it's impossible for a diagnosis to be made or suggested in this type of forum, because you do appear to have several of the symptoms known to be consistent with lupus, I encourage you to see a rheumatologist for evaluation.

I wish you the very best of luck.

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