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Lupus diagnosis? Positive ANA & Anti-DsDNA then negative ANA retest?


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Old 10-30-2017, 09:12 PM   #1
secondnd
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Lupus diagnosis? Positive ANA & Anti-DsDNA then negative ANA retest?

I'm new to the whole lupus/MCTD thing, but I recently had a ANA panel done with ELISA and all of that and I tested positive for ANA & Anti-DsDNA, as well as extremely low vitamin d, low red blood cells, low hemoglobin, & elevated platelets. My doctor really suspects of me having lupus because of all of my symptoms and I have at least 7/11 of the diagnosis criteria, but she doesn't want to prescribe me anything until my rheumatologist formally diagnoses me. My rheumy appt isn't until April of next year so I'm miserable & just want to feel better. I've been sick for over six years now and nobody ever even thought of testing me for lupus until my new primary care dr, so I'm very grateful for her.

I just had a ANA retest to check my titer and apparently it came back negative this time, so I'm confused. My doctor still definitely suspects of me having it and says this can happen, but I just wanted to know opinions. Thank you all in advance!

 
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Old 10-31-2017, 04:48 AM   #2
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Re: Lupus diagnosis? Positive ANA & Anti-DsDNA then negative ANA retest?

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Originally Posted by secondnd View Post
I'm new to the whole lupus/MCTD thing, but I recently had a ANA panel done with ELISA and all of that and I tested positive for ANA & Anti-DsDNA, as well as extremely low vitamin d, low red blood cells, low hemoglobin, & elevated platelets. My doctor really suspects of me having lupus because of all of my symptoms and I have at least 7/11 of the diagnosis criteria, but she doesn't want to prescribe me anything until my rheumatologist formally diagnoses me. My rheumy appt isn't until April of next year so I'm miserable & just want to feel better. I've been sick for over six years now and nobody ever even thought of testing me for lupus until my new primary care dr, so I'm very grateful for her.

I just had a ANA retest to check my titer and apparently it came back negative this time, so I'm confused. My doctor still definitely suspects of me having it and says this can happen, but I just wanted to know opinions. Thank you all in advance!
First let me say I am sorry you have been sick for so long without having been tested for lupus long ago. It's quite common for ANA to fluctuate between positive and negative, which invariably causes confusion, sometimes even for the Dr. With 7/11 criteria and positive anti dsDNA, you have plenty to go on for a diagnosis. I would do everything I could to get your appointment moved sooner. You can call frequently to see if a cancellation spot has opened up and you can ask your PCP to contact the rheum to expedite things. In the meantime you can take OTC anti-inflammatory meds like naproxen if you don't have kidney involvement or stomach ulcers. It will help some. Your PCP could also provide you a prescription for that at a higher dose. It must be somewhat a relief to finally be getting some answers, but none of us with lupus like to hear of more people in the same boat. You'll have lots of company and support here, so please keep in touch.

 
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Old 11-01-2017, 01:21 AM   #3
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Re: Lupus diagnosis? Positive ANA & Anti-DsDNA then negative ANA retest?

thank you so much for replying! I have been put on the cancellation list & my PCP did mention she would call and see if I can get in quicker, but every time she has done so it hasn't helped much. I've been taking naproxen which helps somewhat, but not a lot unfortunately. It is definitely a relief finally getting answers, because I had always suspected lupus but no doctor ever tested me for it so I figured it was out of the question. Thank you again for the response!

 
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Old 11-01-2017, 08:38 AM   #4
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Re: Lupus diagnosis? Positive ANA & Anti-DsDNA then negative ANA retest?

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thank you so much for replying! I have been put on the cancellation list & my PCP did mention she would call and see if I can get in quicker, but every time she has done so it hasn't helped much. I've been taking naproxen which helps somewhat, but not a lot unfortunately. It is definitely a relief finally getting answers, because I had always suspected lupus but no doctor ever tested me for it so I figured it was out of the question. Thank you again for the response!
I do hope you get an appointment soon. If you are not on rx naproxen, you might ask your pcp for it. Since it is helping some, the rx dose is more than double the OTC dose, and insurance may cover the rx cost. It's 500 mg twice a day instead of the 220mg you get OTC. Please keep us posted on your progress.

 
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Old 11-01-2017, 06:22 PM   #5
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Re: Lupus diagnosis? Positive ANA & Anti-DsDNA then negative ANA retest?

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I do hope you get an appointment soon. If you are not on rx naproxen, you might ask your pcp for it. Since it is helping some, the rx dose is more than double the OTC dose, and insurance may cover the rx cost. It's 500 mg twice a day instead of the 220mg you get OTC. Please keep us posted on your progress.

I'll mention it to one of my doctors! My neurologist originally wanted to prescribe it to me for my migaines but I'm allergic to NSAID's so he didn't. I've been in so much pain, I decided to risk an allergic reaction & have been taking naproxen and so far, haven't had any adverse reactions. I'm just nervous about taking more of it because i'm worried about an allergic reaction. But I've been so miserable, I was willing to take that risk. So far so good, so I'll see what my doctor thinks!

 
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Old 11-26-2017, 02:37 AM   #6
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Re: Lupus diagnosis? Positive ANA & Anti-DsDNA then negative ANA retest?

Im so very confused also as ive got a negative ANA but consistently high positive anti DSDNA and positive chromatin both specific to SLE. My family doc said it was probably lupus but when i went to Rheumy blood showed the same and i have quite a few of the symptoms hiwever because I have inflamation in my body (had xray, ultrasound and bone
scan) she says I have rheumatoid arthritis not lupus cause peopke with lupus dont have inflamation. I thought they did? However my rheumatoid factor in my blood work was normal. Ugh confused. My kidney function was normal but ive had trace blood in urine for about 18 months. Any insight? Should I see someone else. She started me on plaqunil 400 mg a day.

 
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