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Tests for a Lupus Flare?

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Posted 7/11/2012 9:54 PM (GMT -5)
I was wondering what tests your doctors do to confirm a lupus flare. I have been doing some reading and it seems that there are a lot of tests that my doctor never runs. I have been ill for 9 months now and all he ever runs is a CBC and urinalysis. As long as those look okay he says that my lupus is calm and nothing is wrong.

Now, it is important to note that my CBC and urinalysis has always come back in normal ranges. It was other tests that confirmed the SLE but that doctor has since moved away and I am with a new rheumy. I just don't know what to do because I have three other doctors saying that what is happening, from what they are seeing, is a lupus flare. I just can't get help from actual lupus doc. I am getting a bit frustrated.

I am worried because the latest tests show that my central nervous system is being affected by the lupus but still the rheumy just looks at the CBC and urinalysis. It is almost like he thinks that if my kidneys are not affected than nothing is really wrong.

Sorry...I am starting to vent and I don't want to bring people down. If you have any info on what other tests I could request, I would greatly appreciate it. I am feeling a bit deflated.

Thanks

LupusMomma
Posted 7/11/2012 10:12 PM (GMT -5)
Oh, my. A rheumotologist who is only looking at basic bloodwork isn't worth his weight. He should be looking at inflammation markers...

But who is doing the tests that show CNS involvement? Can that Dr treat the situation?

I would ask the Drs who consider it a Lupus flare if they have another rheumy they would recommend.
Posted 7/12/2012 10:12 AM (GMT -5)
I had a rheumotologist like that once. I have moved on to a wonderful rheumotologist who asked questions and listens.
I am with Lynnwood, you need to move on a find a doctor who will do what you need and most of all what they are supposed to do. Hang in there and remember not to take aspirin above the amount the doctor might prescribe for your heart; which is a baby aspirin. Aspirin lowers your GLA and can make the attach on your body even worse. It is good to take either supplement or food that will bring your GLA up. All this info is available on the web.
Posted 7/14/2012 7:32 AM (GMT -5)
First, the rheumatologist should ask about your symptoms, visually inspect your joints, and check range of motion.

As for tests, a CBC (blood count) with differential is important. When lupus is flaring our cells may not be the right size or shape.

A CMP (metabolic panel) will show irregularities in other areas.

Complement. Low complement is a sign of autoimmune activity.

ESR (sed rate) is a marker for inflammation in the body.

C reactive proteiin is a marker for inflammation in the body.

If you have nephritis, then urinalysis for protein excretion along with BUN, creatine clearance and GFR (filtration rate).

My rheumatologist usually adds antiDs dna.

We do all of this every six months even thought I am in remission. Good luck.

Linda

Posted 7/15/2012 8:01 PM (GMT -5)
Thanks for all the information and replies.

The doctor that found the CNS involvement is a neuro-ENT (can't spell the correct name) and he does not deal with that type of problem. So, I am going to ask him who he would recommend. I am a little disheartened because I already drive 3 hours to see the rheumy I have now and am not looking forward to finding another. Oh well, 'tis the life of a lupie!

I will definitely ask for those tests to try to figure all this out. I wonder what type of doctor deals specifically with the CNS type stuff...a neurologist?

Take care out there and I hope today is a good one for all of you!

LupusMomma
Posted 7/16/2012 11:23 AM (GMT -5)
Probably a neurologist will help you.
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