false negative on lupus test?

[libbybolt]

Can taking corticosteroids give a person a false negativeon a lupus test?  My daughter has been on flonase (a corticosteroid)  for four months.  She recently had two lupus tests within a month of each other and both are negative.  BUT she has the red facial rash in the distinctive localized shape of a butterfly mask across her cheekbones and bridge of nose. Also these symptoms: severe headaches, daily low grade fevers, ankle and shoulder pain, nausea (always says "I feel like I'm going to throw up!"), extreme fatigue.  She is eleven years old and sleeps duing most waking hours.  Even goes to nurse's office and sleeps up to three hours at a time.  Tested for Epstein-Barr, parvo, mono - nothing abnormal there.Has had a ct scan of sinus which shows "opacity of the ethmoid sinus" and "inflammation".  Has no allergies (has not been tested for food allergies).  Low Igg level on cbc.
Could this be lupus and it her flonase is affecting her test results?  Or can anyone think of anything else this sounds like??  My daughter is really suffering and beginning to feel hopeless.  This is a formerly very active child who can barely walk up the  stairs  to her bedroom now.

[WishingWell1000]

Diagnosing Lupus can take years.  Is your daughter being followed by a pediatric rheumatologist?  If not, you may want to be referred to one; preferably one at an academic institution because they are the ones who usually see and treat the most difficult cases.  Academic institutions are the ones who are constantly doing research, and it is there where they see the most variety of illnesses.  Although I had similar symptoms as a child that your child is now exhibiting, my Lupus tests did not start to positively convert until my late 20's.  I was originally told I definitely did not have SLE; however, I was never seen by a pediatric rheumatologist.  When I began seeing a rheumatologist again in my mid 20's, the rheumatologist suspected a connective tissue disease, but was uncertain whether it was SLE until by blood labs converted to a positive test (or was at least positive at the time my blood was drawn) for connective tissue disease.  It took 10 years later until my tests converted positive specifically for SLE.  Somewhere in between, it was also suggested I may have Lyme disease. Tests for Lupus can convert from negative to positive and positive to negative.  SLE mimics a lot of other diseases, and, therefore, can be difficult to diagnose even under the watchful eye of an experienced physician.  Lupus is not diagnosed by blood tests alone.  One must have 4? of the 10? (I think these are the correct numbers.  If not, they are close to the numbers) criteria ( for example, butterfly rash, photosensitivity to sun, neurological signs, etc.  These criteria can be looked up online.)  specified to meet the diagnosis of SLE.  Some lupus patients never display the required number of criteria to meet the diagnosis, and/or it can take years before a patient meets the criteria for diagnosis.  This is why it is important for your child to be carefully watched by an experienced
rheumatologist.  They will periodically take blood tests (2 blood tests over a few months do not necessarily mean anything unless they are positive.) to see if there has been any changes in her blood work, because, as I said earlier, blood tests convert back and forth from positive to negative and vice versa.  Sometimes it just takes the right timing (......and, this can sometimes take years) for one to finally have a blood test and the rest of the criteria needed to confirm a positive test and diagnosis for SLE or some other connective tissue disorder.   Your child may have some other rheumatological disease as well such as childhood Rheumatoid Arthritis.  A good specialist will not be narrowly focused, and, will continue to ask themselves what else can this be?  It may take time, but with a good rheumatologist, you will hopefully get a correct diagnosis, and the right information to treat her, and to help relieve her symptoms.  It also may be a good idea to get a second or 3rd opinion as well, because, unfortunately, mistakes are made.  Please keep us updated how your child is doing.  I wish your daughter the best.

[Lori707]

I would suggest your daughter also get tested for Celiac disease. Don't exclude Lymes as Karajo says. I suggest you find another doctor who will test for Lymes. Keep in mind that a person can have Lymes while testing negative for it and you don't have to see a bulls eye rash. Make sure her blood test goes to IgeneX Labs in California. They specialize and their tests would come out positive when most other labs won't. It's protocol to test for the Essay first and if that comes out positive, then be tested for Lyme Western Blot. It's very important that your daughter gets the Lyme Western Blot. It's more sensitive.
Also have her get a CD57 test. That can tell the doctor how high or low her immune system is.

Hope she feels better! Keep us posted.

[karajo]

One more thing, did the steroid help your daughter feel better?

[karajo]

If you google "Lyme dsease in Tennessee" you will see that your dr. is mistaken.  

But it could very well be that her immune system is weak because of the repeated strep throat.  I would encourage her to build her immune system back.  There are several things that she could do.  #1 is to build her good bacteria w/ acidopholus.  Then there is vit. C and other nutrients that can help build her immune system.  I encourage you to investigate that as well.

Since she is having joint/muscle pain I think you might could try a internal medicine dr. to see if he/she would test for some tick borne illnesses.  

[libbybolt]

She has been sick for almost a year.  Began complaining last year of headache and fatigue but I thought it was because she was bored at school and needed glasses.  Then this past summer she complained every day of headache and exhaustion.  Again I dismissed it b/c she is at the barn 6 days/wk in the summer working with her pony and doing barn chores all day in the high summer heat.  I thought maybe she's not getting enough water and also skipping lunch.  She had strep diagnosed approx. 12 times between May and November 2010.  FINALLY after months and months of antibiotics the strep has not reoccurred since Thanksgiving.  it was in August - when school started and she was no longer at the barn - when I really started paying attention to her complaints.  Plus she was now so tired all the time she would fall asleep in car and go straight to bed when we got home.  

We do live out in the country and have ticks every summer but Pediatrician says no way she has anything tick-borne, that they just don't see it down here (Tennessee).  ALso being tested for gluten allergy (??).

[karajo]

Yes, a person can have lupus and have a negative ANA.  The Lupus foundation says that ANA levels vary and are not associated with disease activity.  I do know that sun exposure can cause the ANA to be elevated in someone who has lupus.  

The dx process is so aggrevating.  Some things that you might want to consider are chronic fatigue, lymes, rocky mountain spotted tick and other tick borne illnesses.  

How long has your daughter been sick?

Praying for you guys, Kara