Lupus Forum - Lupus Symptoms With Negative Blood Work

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Q: Lupus Symptoms With Negative Blood Work

asked by: PFBella on April 17th, 2007

New User

I saw a rheumatologist 3 months ago and discussed my symptoms with him and he told me that I had lupus. He did a full blood panel and then did a blood test for lupus. It took about a month for him to get me the results. When I saw him again he said that the blood test was negative for lupus yet my symptoms are getting worse. I break out into a horrible rash at least 4 times a week even though I am on Plaquenil and prednisone. The rash makes me look like a giant raspberry and is extremely itchy. I saw my rheumatologist last week and he told me that he thinks that it might be fibromyalgia though that doesn't make any sense to me. I am extremely sensitive to light. I was outside the other day for about ten minutes and had to go inside because I got an excruciating migraine, nausea, and broke out into a rash. I just don't know what to do, think, or who to see now. Is it possible to have lupus though the blood test is negative? If not, does anybody know what could be going on with me?
Thanks

Replies(5)

PsychNurse007

replied on October 15th, 2007

New User

The most common blood test they use to diagnose lupus is the ANA (anti-nuclear antibody) which is pretty much unreliable. Negative resultsdo not rule out lupus.

Jenniboo

replied on May 15th, 2009

New User

Lupus and negative blood work

I have same situation where i have every symptom going for lupus yet the ANA comes back negative so they dismiss it as fibro!! So if a negative test does not rule out lupus why once the docs see its negative do they rule it out??

bubbalupus

replied on May 30th, 2009

New User

Lupus rash

I'm a 43-year old woman. My symptoms started out as severe arthritis and butterfly rash. I had a positive ANA test, but other blood tests were negative. Doctor won't give me a diagnosis of lupus -- calls it a lupus like disease, although the treatment is for lupus. Have the butterfly rash on my face for the past 2 months and a "sunburn" looking rash on my back and chest that gets better at times but never goes away. Also had bouts of severe itching even though the rash looked better. Rash seems to worsen if I get too warm. I'm on prednisone and hydroxychloriquine. Very frustrated with lack of progress, although the arthritis has pretty much resolved. I'm wondering if anyone has had luck with a gluten free diet or avoiding certain foods.

kdlee

replied on May 30th, 2009

Supporter

Like you I had a negative ANA for long time--recently it was positive, either way doesn't mean you don't have Lupus..I also get the rash worse wehn it gets warm and it can itch..Sensitive to light so much that there are times I litteraly put on two pair of sunglasses..A mans glasses over a womans works great..

I do have to avoid oily foods now but think that due to having gallbaldder removed..

I am on Methotrexate and FOlic acid for the Arhtitis and a new drug called Savella for the Firbormyalgia..He hasn't helped with pain but it has given me more energy so that is a huge plus..

Unfortuantely when you get into the autoimmune stuff-nothing ever makes too much sense..It's hard for the docs and for us the pts. because we have soo much going on they ahve to rule out this and that..

My doc says if it looks like a duck and quacks like a duck then it's probaly a duck so you treat it like a duck..His specialty is Rheumatology and he is a true auhority on FIbro/Lups etc..

lookinup

replied on June 19th, 2009

New User

lupus

It seems that a lot of our stories are the same. My Dr. stated the same thing. I also have fibro and have been dealing with the no positive blood work and months going on a years worth of suffering of sun sensitive. My feet burn so bad I can not stand socks on them however they are so weak/sensitive to everything without covering and protecting them brings pain. I am going to the lupus center in Pittsburgh ,Pa. with a little bit of hope and maybe some answers. where i live i can't even get into a R.A for 7 months and thats 50 miles away Most of the doctors have a hard time excepting my insurance so It seems like i slowly watched my life changed and i have been the only one doing anything to not allow it to go however. I am a single mother of two children who need me.

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