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does this sound like lupus???

Hi--

My 15 year old daughter has been bounced from orthopeadist to physiatrist to neurologist to rheumatalogist... and we still don't have a diagnosis, or even very many positive test results.

Things she DOES have:  HLA-B27 gene; enlarged blind spots in left eye; chronic fatigue; non-injury joint damage in left great toe, requiring corrective surgery; and--most recently--a positive ANA (low titers).  oh--and a previous inflammation in bowels that caused major constipation and apparently compressed a nerve in her leg for several months.

The rheumatalogist decided last week to treat her with sulfasalazine, as if she has an "inflammatory process" going on.. like juvenile rheumatoid arthritis,I think... even though MRI of foot didn't show any particular arthritis.  Six days later, daughter suddenly develops 101 degree fever (higher in eves) and a horrendous headache that isn't relieved by ibuprofen or tylenol.    She also has a very very red face--not rough or raised--just red, even across nose.  (She's very fair and often has high color, though.)  She has slept 22 hours in past 24.  

Dr didn't want to see her again--just said to discontinue sulfasalazine for one week to see if headache dissipated or not.

I thought he already tested her for lupus, and it was negative, but what I'm reading on this forum indicates maybe one round of tests isn't necessarily conclusive.

So, I'm just curious if this sounds at all like lupus to you guys?  (You can read further details by going to timeline on my journal page, if you want.)

Thanks!

dazedmom
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434278 tn?1324706225
I'm not sure I know what to tell you.  Some of the symptoms sound like MS.  You could check on Lymes.  But some of the symptoms sound like it could be lupus.  You indicated that some of the test revealed an inflamatory response.  Which test were those.  And what was the ANA and the pattern?  I've had several ANA test and some have been low, some even negative...the last one was 2,560.  But my sed and CRP was still within normal ranges.  I've been dx with mild lupus and am on Plaquinel.  I guess it's considered mild when it doesn't envolve any organs.  

There are 11 criteria for a lupus diagnosis.  One needs 4 in order to get a dx of lupus.
Maybe this article can help you sort some things out.

http://www.lupus.org/webmodules/webarticlesnet/articlefiles/946-What%20I%20Need%20to%20Know%20About%20How%20Lupus%20is%20Diagnosed.pdf
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Avatar universal
well... they looked for MS all summer, but never found an lesions and didn't have enough cause to go for lumbar punctures and stuff.

She had a clear ELISA test and all doctors absolutely refuse to run a Western Blot.  I've considered going to an outside lab for that...

I don't know what her actual ANA was, patterns or anything.  her sed & CRP seem to be consistently normal.  I don't think she's had a test that indicates inflammatory response:  the rheumy just decided all her symptoms pointed her that way.   That's why he's "trying her out" on the sulfasalazine to see if it makes a difference.  (And that's frustrating too, since I know lupus patients should avoid sulfa drugs!)  

I'll look at articles you sent, and see if I can sort my way through.

Can you suggest particular tests I ought to request, that might help clarify the situation?

Thanks for your help---

dazedmom
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Avatar universal
Oh wow.  Just looked at the page you sent.  VERY helpful.... and it answers the testing question, too.

I'd give my daughter credit for 3 1/2 of the major symptoms, (rash, ANA, arthritis, and.. I think...the neurological symptoms.  Add a huge bonus for chronic fatigue.  

This fever of over 100 degrees... is that supposed to be constant?  or sometimes?  or every evening... what are they talking about?

Guess I'll try to get photos next time I notice the rash; and we'll talk to doctor again.

Thanks!
dm
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Avatar universal
What are you looking for with the Elisa and the Western Blot?  I think of them as tests for AIDS.  I'd sure want to go EVERYWHERE else before going there.
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Avatar universal
Elisa and Western Blot also test for Lymes.
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434278 tn?1324706225
I know that lupus and fibromyalgia are conditions that wax and wane.  So I would think the fever could be either constant or a come and go thing.  Most people with lupus has either a rash or a bumpy rash or what is called a discoid rash.  (kinda looks like rosacia)  But the rash I now have didn't show up until months after I began to have major symptoms.  It started out being a really fine lacy looking rash, now it looks real bumpy; looks like I've gotten a real bad sun burn w/o the blisters.  It sometimes has raised borders.  About the arthritis.  I hurt ALOT in my joints for months before I saw the first joint swell and get red.  It doesn't swell as much as rheumatoid arthritis would.  But you have to have at least two joints swell on both sides of the body.  Some rheumatologist have to see organ involvement before they will dx someone w/ lupus and even treat them.  I looked up the medicine you spoke of, "sulfasalazine".  It said that dulfonamide-based antibiotics are potent sun sensitizers.  Sulfasalazine are used for ulcerative colitis and rheumatoid arthritis.  "The Lupus Book" said it is best to be cautious about using these drugs.  It sounds like that is an antibiotic of some sort.  Lupus patients are sensitve to the sun.  

Does your daughter ever have sores in her mouth or nose?

Now I'm not sure about CFID, but PlatletGal could fill you in on that.  I do know you can run fever with CFID, but I'm thinking you don't with fibromyalgia.  
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