New lab results and I'm confused

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Regular Member

Date Joined Dec 2006
Total Posts : 102
   Posted 7/9/2007 11:52 PM (GMT -6)   
I went to the rheumy today. I think I need to change my signature here. She is still saying she won't rule out lupus, but she thinks something else is going on. However, previous rheumy's said lupus was the most likely call. I don't know what to say I have...non-specific autoimmune disease with lupus-like symptoms???
Anyway, I got my bloodwork back from early spring. (I only see the rheumy every 3 months.) This was the first time in three years I had a negative ANA! So I guess that means, things are getting better? If so, then why do I still feel so bad?
My rheumatoid factor was the lowest it's ever been, too: 7.1.
But my sed rate is 69 (normal range 0-20) and C-Reactive Protein is 23.9 (normal range 0.0-4.9). She said that we've got to find out what's causing these high numbers.
Because of my frequent mouth sores, she wants me to see an ENT for a mouth and nose lining biopsy (ouch!) and to rule out vasculitis. She also said she's suspicious of something called Behcet's syndrome. I don't think I've seen that one on any of the lists here.
She seemed to indicate that she thinks it coudl be something vascular or bone-related since the ANA is negative now. She talked about having a bone scan. I also have to have an MRI on the knee I injured last fall, because the bursitis just isn't going away.
I was the last patient of the day, and now I just feel confused. I just want to know what's wrong with me. sad
Wife, writer, artist, mom to 2 wonderful boys
Lupus, arthritis, PCOS, mild depression
Now taking: plaquenil, limbrel, metformin XR, Zoloft, and the occasional percoset

Veteran Member

Date Joined Mar 2006
Total Posts : 2608
   Posted 7/10/2007 1:18 AM (GMT -6)   

It's so hard when your rheumy isn't able to pinpoint what you have. You can have lupus and and an elevated ANA and then some time later your ANA can come back negative, but it doesn't mean your lupus has gone away.

It sounds like your rheumy is not overlooking anything and her thoroughness sounds pretty impressive. She may be as frustrated as you at not being able to tell you exactly what's wrong with you. A couple of years ago my rheumy gave me a firm diagnosis of lupus. Then, a month or two later, after my exam, I overheard her talking to her nurse and she said, "I don't know if she has lupus or RA or both." It turned out that I have both, but she was frustrated while trying to come up with the correct diagnosis.

I know just how hard this is on you Kari. When is your next appointment? Take care and let us know how you're doing. I'll be thinking of you.


Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 6 mg, actonel, tri-est (compounded estrogen) 7.5 mg 2xmultivitamin, calcium w vit D, fish oil, aspirin

Veteran Member

Date Joined Sep 2005
Total Posts : 1744
   Posted 7/10/2007 6:52 AM (GMT -6)   

Hi Kari,

A negative ANA, especially when you've had positive ANAs in the past, really doesn't mean a whole heck of a lot.  ANA is a very crude measurement, and as such, cannot even be used to monitor disease activity (any of the ANA related diseases, not just lupus).  With your elevated SED rate and ESR, though, something for sure is going on.  It sounds like your rheumy has a handle on it.  It's been my experience that AI disease can be very ambiguous for the first several years that it starts, and it is very difficult to put a specific diagnostic label on it.  My rheumy reminded me at one point that I should spend less time worrying about a diagnosis, and concentrate more on feeling better.  In other words--go with how you feel because that is probably a better indicator of what's going on than any stupid lab value.

I hope you feel better soon.  Has your rheumy put you on plaquenil yet?


Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 7/10/2007 1:18 PM (GMT -6)   
Kari, I agree with everything Pat and El told you. Labs can be so weird and vary a lot with lupus. I agree that one negative ANA doesn't mean a lot, especially since you've had positive ones and with your high sed rate and crp.

I do know how frustrating all of this is. I went through years of no diagnosis, other than being called "lupusy". Now I have a UCTD diagnosis, which still isn't specific, but my rheumy tells me it's lupus, but he won't write it on my chart for insurance purposes.

If you have questions for your rheumy, it wouldn't hurt to write them down and give the office a call to see if you can talk to the doc or make an appointment to come back in if it's a long time until your next appointment.

Hang in there - I know this is hard. Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops



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Regular Member

Date Joined May 2006
Total Posts : 236
   Posted 7/10/2007 1:40 PM (GMT -6)   
I have had a lot of mixed results in the past and even now with my kidney tests although I've been told definitely kidney disease. It took years for my ANAs to be constant and elevated. Same for the false positive syphillis test. They said borderline lupus 10 years ago and looked for everything else but lupus until 2 years ago when it became more obvious/severe. My SED rate and Rh factors are always negative, yet I have severe rheumatic arthritis. Apparently, my course of lupus doesn't make sense to my doctors and my doctors don't make sense to me. Fortunately, it seems that you have a competent and caring doctor, which is a blessing. Probably a good idea to rule out other possibilites, but it sounds more like lupus (vasculitis can also be a manisfestation of lupus). Did they test for RNP, IgG, IgA, lupus DNA, etc.? I wish my brain was working today so I would know what the additional tests were called (?ENA's). They ran a bunch of tests on me to see what type of lupus I had. Apparently, some test can also show vasculitis, Antiphilosolipid Syndrome (APS), etc.

Some of us are odd lupies (no rash and either neuro or vascular problems initially). Hard to believe it gets odder, but we may not fit the experts criteria and pattern for some time. It seems like a big puzzle where all the pieces have to fit perfectly. It can be a very frustrating experience when you don't fit the profile for years to come. Okay concentrate on getting better, most definitely. I finally came to the conclusion that whether or not they found the reason for my illness, I was still in need of treatment and needed to get better. Aside from not getting my prednisone and cellcept yet, I am pretty much receiving the best medicine I can get for my symptoms. The only concern for you and for others like me, is that they need to treat the entire disease faster and better...and not just treat the symptoms. Right now I know what it can do and want to slow the sucker down as much as possible. Still not sure if the other medications will do that, just hoping so. Best advice I can say is keep going and look for the best doctors available to you. I hope you don't have wonder for long - Take care - Kristin
  Dx:  Lupus CNS 11/2005; Current - kidney disease, enlarged heart, MVP/regurg, dementia; GERD; vision loss, narcolepsy, rheumatic arthritis, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx:  Atenolol, Aricept, Flexeril, Motrin  Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.  

Regular Member

Date Joined May 2006
Total Posts : 101
   Posted 7/10/2007 3:34 PM (GMT -6)   
I have lupus with kidney, heart and cns involvement and have never had a positive ana. My diagnosis was confirmed by renal biopsy. I have had elevated c-reactive protein, rheumatoid factor, sed rate and other factors; but never a positive ANA.

Regular Member

Date Joined Dec 2006
Total Posts : 102
   Posted 7/10/2007 7:51 PM (GMT -6)   
Thanks for all your kind replies. This autoimmune stuff is just plain weird, isn't it? It doesn't sound like anyone fits into any clear pattern or diagnosis, consistently.
My doctor is a real sweetheart...she's very easy to talk to, and we always end up chatting about all sorts of things. But that's not necessarily a good thing if it distracts me from the questions I have! Seems like I never think of them all until I'm on my way home.
So, basically...the negative ANA doesn't mean anything, really?
One thing I love about this board is that you help so much when I'm frustrated. You've helped me realize that three years since my initial workup isn't really that long in trying to pinpoint a diagnosis. Just knowing that it could still be a while helps me accept this loooonnnnggg season of not knowing.
Thanks a bunch for being there!
Wife, writer, artist, mom to 2 wonderful boys
Lupus, arthritis, PCOS, mild depression
Now taking: plaquenil, limbrel, metformin XR, Zoloft, and the occasional percoset

Veteran Member

Date Joined Dec 2005
Total Posts : 1950
   Posted 7/12/2007 3:40 PM (GMT -6)   
Hi mamamuse,
I'm in the same boat. I have high ANA sometimes, neg for Rheumatoid factor though I've been positive in the past--have very clear symptoms of several autoimmune based problems: diabetes, osteoarthritis, hashimotos, vitiligo and hyperpigmentation. Have anticardiolipic antibodies and past heart damage, weird ut and gi symptoms and diverticulosis. Just an odd mix. Am negative for anti-ds-dna. My disease worsened significantly after being given interferon alpha for a supposed hep c infection that now they think I never had. Have they checked you for sjogrens? sjogrens can be bad. There's just a bunch of AI diseases and the tests for them aren't 100% like everyone is saying above, so my doc thinks that I'm just coming down with it, like the tests will change, and he just faithfully tests and treats me. It just takes time sometimes for them to get blood at just the right time. Hang in there. The main thing is you get treatment and, since the treatment is about the same for alot of the diseases, hopefully they can solve the problems you are having. I understand so much how you feel. I've been 13 years and still have a non-conclusive, weird diagnosis. I agree also, my doc tells me a negative ana means nothing, while a positive only sometimes means something, if other syjmptoms and tests show problems.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments

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