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Old 03-02-2009, 02:16 PM   #1
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Dx'ed w/possible Lupus

I went to my rhumatologist for a followup visit. I was told i had Fibromyalgia but she did some blood work. Turns out my ANA was positive and my 'immflamatory markers' were high. She mentioned Lupus but wanted to do some a repeat test with some other test. I could do the blood work that day because i had a cold and was told to wait 3 weeks... it has been 1 week so far. I am kinda worried - should i be?? anyone have this happen to them. I think i am more concerned about the immflammatory markers becuase i have been on antiimmflamotory meds for the last 6 months prior to the blood work. Any help will be appreciated - thanks!

 
Old 03-02-2009, 06:26 PM   #2
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Re: Dx'ed w/possible Lupus

ddrw, hi & welcome. Have you read the "sticky posts" at the top of the thread list? That's a good place to start, as you'll see that the diagnostic criteria for lupus are complex. Do any of the criteria ring bells with you?

The ANA test is really only a "threshhold test", because ANA can be positive in multiple conditions, or simply due to a passing virus or family tendency. i.e., it actually proves nothing in & of itself. Usually a rheumie runs all the standard stuff (CBC, etc.), and also more specialized tests that look for specific autoantibodies, like anti-ds-DNA, anti-Sm, anti-Ro, anti-La, anti-RNP, rheumatoid factor, ETC.---there are as many as 16 possible in lupus. But since only two, anti-ds-DNA & anti-Sm, are considered very "specific" to lupus, if any others turn up, it can take months, spmetimes even years, for things to clarify. (NOT what anyone wants to hear, huh?!)

Another hurdle is that ANA & some of the specific antibodies can fluctuate from test to test, as we flare & recede. But ANA can also go positive due to a passing virus. So your rheumie asking you to come back in when your cold is gone makes sense.

Did you ask which inflammatory markers were elevated? ESR (sed rate)? CRP (C-reactive protein)? You could ask for copies of all your labs & keep same in a personal file. That never hurts to do.

Were you taking anti-inflammatories for fibromyalgia? (Just curious.)

Because more *general* symptoms can appear in so many diseases & conditions, rheumies look for more *specific* symptoms & test results that can point in a narrower direction. These can take awhile to "trap" or to appear. Personally I probably had only one specific thing that could only mean lupus: lupus-specific rashes, confirmed via biopsy & immune stain tests. All my other problems & findings were not specific to only lupus (anemia, fatigue, joint pain, elevated sed rate, weight loss, GI & urinary problems, migraines, anti-Ro antibody). And I don't say this to discourage you, but to convey how much patience our doctors & we sometimes have to conjure up.

Please know that if it is lupus or some close cousin (and I hope it isn't), many people remain fairly mild & are helped hugely by medication & ongoing medical care. I hope you get more clarity soon & post updates when you can. Best wishes & good luck, sincerely, Vee

 
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Old 03-08-2009, 10:15 AM   #3
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Re: Dx'ed w/possible Lupus

Quote:
Originally Posted by VeeJ View Post
ddrw, hi & welcome. Have you read the "sticky posts" at the top of the thread list? That's a good place to start, as you'll see that the diagnostic criteria for lupus are complex. Do any of the criteria ring bells with you?

The ANA test is really only a "threshhold test", because ANA can be positive in multiple conditions, or simply due to a passing virus or family tendency. i.e., it actually proves nothing in & of itself. Usually a rheumie runs all the standard stuff (CBC, etc.), and also more specialized tests that look for specific autoantibodies, like anti-ds-DNA, anti-Sm, anti-Ro, anti-La, anti-RNP, rheumatoid factor, ETC.---there are as many as 16 possible in lupus. But since only two, anti-ds-DNA & anti-Sm, are considered very "specific" to lupus, if any others turn up, it can take months, spmetimes even years, for things to clarify. (NOT what anyone wants to hear, huh?!)

Another hurdle is that ANA & some of the specific antibodies can fluctuate from test to test, as we flare & recede. But ANA can also go positive due to a passing virus. So your rheumie asking you to come back in when your cold is gone makes sense.

Did you ask which inflammatory markers were elevated? ESR (sed rate)? CRP (C-reactive protein)? You could ask for copies of all your labs & keep same in a personal file. That never hurts to do.

Were you taking anti-inflammatories for fibromyalgia? (Just curious.)

Because more *general* symptoms can appear in so many diseases & conditions, rheumies look for more *specific* symptoms & test results that can point in a narrower direction. These can take awhile to "trap" or to appear. Personally I probably had only one specific thing that could only mean lupus: lupus-specific rashes, confirmed via biopsy & immune stain tests. All my other problems & findings were not specific to only lupus (anemia, fatigue, joint pain, elevated sed rate, weight loss, GI & urinary problems, migraines, anti-Ro antibody). And I don't say this to discourage you, but to convey how much patience our doctors & we sometimes have to conjure up.

Please know that if it is lupus or some close cousin (and I hope it isn't), many people remain fairly mild & are helped hugely by medication & ongoing medical care. I hope you get more clarity soon & post updates when you can. Best wishes & good luck, sincerely, Vee
thans Vee - i didnt ask many questions because i didnt know what to ask. I have to get the repeat labs next week and i will ask for a copy of the original report. I originally was on the antiimmflamatory meds for my back but the rhumatologist keep me on it becuase it seemed to help my morning stiffness. ill keep you posted.

 
Old 03-18-2009, 12:59 PM   #4
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Re: Dx'ed w/possible Lupus

Thanks VEEJ,
I had my repeat blood drawn yesterday so will know in about a week. Whren i was there I assked for a copy of my blood work. My ANA was positive with a Titer of 1:80 and was homogeneous. From what i have read this doesnt sound too bad. The repoeat labs will have the other more indept tests. I also had a SED RATE of 40 MM/HH. The other high test results was a CRP Inflammation test which was 23.6, reference range is <9.0. Then some low values in my CBC which i am used to seeing. I have always had issues with anemia. Thanks again!

 
Old 03-18-2009, 03:02 PM   #5
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Re: Dx'ed w/possible Lupus

ddrw, when the new test results come back, also look for specific autoantibody (etc.) tests. These are extra (add-on) tests often done when the values you cited (CRP, sed rate, ANA) elevate & when symptoms warrant. Here are a few: Rheumatoid Factor, anti-ds-DNA, anti-Sm, anti-Ro, anti-La, anti-RNP, antiphospholipid, ETC.

Dr. Wallace describes all manner of these "extra tests" in his hardcover on lupus. FYI, he lists ones seen in lupus and also other "close cousins"; but, to complicate matters, some of these markers turn up in *multiple* diseases. This hardcover is most libraries. And another very helpful rheumie/author is Dr. Robert Lahita.

I had on/off anemia: B-12/Folate kind. I also had prolonged bouts of inflammatory pain: shins/long bones (from teenage years onward), lower back, sciatica, etc.

I'm glad you're keeping at this & hope you can some answers & relief soon. Take good care & keep us posted, OK? Best wishes, Vee

 
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