Has anyone been diagnosed with lupus?

[NewmanFamily6]

I have a lot of the symptoms but then again so does anyone with the flu....Jst curious how they diagnosed you?

 

[CleoPahd]

I have. It's one of those things that can take a long time to diagnose because it mimics and/or is similar to other conditions. With me it was a combination of blood test results along with the development of certain key symptoms over time. An ANA titer is pretty much where they will usually start if you seem to have real lupus symptoms.

 

[Luv2Camp]

I was diagnosed with lupus 18 years ago. It is diagnosed with a combination of symptoms and lab tests. The Lupus Foundation's website (www.lupus.org) has tons of information on it including the below symptom checker. A good doctor is crucial for diagnosis and treatment!


http://www.lupus.org/newsite/pages/body_tool.aspx

 

[Wishing on a star]

Have you ever had the Lupus 'butterfly' rash across your cheeks???

I understand that one can suffer for several years before getting a definitive positive test result.

A LUPUS attack which is not an ongoing LUPUS condition can also be caused by a perfect storm of triggers... (taking antibiotics, lots of sun exposure, stress, etc....)

I have had a LUPUS attack/crisis so bad that I had DH take me to the ER. My ankle joints were so inflamed and painful that I could barely walk. The next day, after they said that they suspected LUPUS, I woke up with the tell-tale butterfly rash. That DEFINITELY indicates LUPUS.

I understand that with LUPUS, the joints in the extremities are very affected.... while others are probably not.

 

[twinmomplus2new]

A blood test to test your histomme levels. Under 80ies is considered ok if I recall correctly.
You should also need several of these tests over a period of time. Some taken when your feeling crappy and some when your not. Not everyone gets the rash by the way...
31-80 is still ok.

 

[C.Ann]

Adult DD had to be tested today - results should be in on Wednesday.. She's had all of the symptoms before - except for the butterfly rash.. But - on Sunday her ankles swelled up like crazy, her joints ached, and she had this horrendous red rash on her legs all the way from her thighs down.. It was firey red - unlike anything I've ever seen before - except maybe similar to measles or scarlet fever.. (Not itchy at all - more of a stinging/burning sensation..) She took Benedryl - in case it was some kind of allergic reaction - but it didn't help.. I told her to take photos of the rash in case it faded before her appt. with the doctor today (it didn't), so she was sent right over to the hospital for blood work to check for lupus.. (She also had what I would call a "moon" face today.)

I've seen her face look pretty bad in the past, but I wouldn't call it the typical butterfly rash.. Hoping and praying it's something else.. She has enough other health issues to deal with..

 

[DisGirlAllie]

I know that Timon (Cass) on the Canadian Board has lupus.

 

[nmmom95]

My sister was diagnosed with Lupus 9 years ago. It took her almost 3 years to get the diagnosis. As pp said, the disease mimics many others.

 

[dejr_8]

My wife has has Lupus since she was 16 (now 42) - mainly Lupus Nephritis with some mild RA. During one flair she had the characteristic butterfly rash.

Lupus is not an initial diagnosis (for the most part) but it is what is left after other diseases have been ruled out. Lupus is not a singular disease in that patients can have such different manifestations. Some patients have high ANA (anti-nuclear antibodies) which is one measure that you are producing antibodies against self (i.e autoimmune). Other patients have normal levels of ANAs.

There has not been a definitive root cause assigned to Lupus so it is difficult to develop a treatment that will help all patients (research LJP 394). Also, look up Benlysta which looks promising.

Good luck!