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phillygeekgirl

Right, so anyway to address the OP's question - yes. Most of us feel some level of crap on a daily basis. The fact that your GP ran the ANA and the dsDNA before even packing you off to the rheum is indescribably helpful. You're walking in the door with a (extremely low) positive result on the dsDNA. Fair warning, depending on which of the diagnosis criteria your doc uses, you might not get diagnosed with lupus straight off. UCTD (undifferentiated connective tissue disorder) is quite likely. Don't overthink the name. The point is to a) be heard and taken seriously, and b) to have your symptoms treated. The treatment for initial stage lupus and UCTD is identical: Plaquenil (hydroxychloroquine), so the name basically doesn't matter. The [Undiagnosed Weekly Thread](https://www.reddit.com/r/lupus/comments/widf8a/weekly_suspected_lupus_thread_week_of_august_07/?utm_source=share&utm_medium=ios_app&utm_name=iossmf) has a pinned comment with a lot of helpful info and links. Highly suggest you read through some of it. Good luck.


MrsLlamaRamaDingDong

>Most of us feel some level of crap on a daily basis "Most of us feel some level of crap on a daily basis" \^\^\^\^\^\^\^ This.


Holadama0526

I was diagnosed after all with UCTD but no medicine as given to me


MrsLlamaRamaDingDong

For a reference - I have Lupus Nephritis: My "Ana Screen, IFA" has always been positive when tested. My DNA (DS) Antibody has been as high as 5,480 and the lowest it's ever gotten is 7. Currently on a bunch of meds and it is 9.3


phillygeekgirl

*has been as high as 5,480* Jesus fuck. That's.... I mean even taking into consideration there are 5 different lab reference ranges (where one is >9 is positive, another is >120 positive).... I mean even considering all of that, 5480 is kind of stunning. Glad you're doing better.


MrsLlamaRamaDingDong

😂😂😂 Yea, let's just say I was NOT doing well. That was also run through Quest though so the same ranges as the OPs.


Longjumping_Plan_829

Damn my DNA was 2,134. Out of curiosity what meds are you on? I also have lupus nephritis


MrsLlamaRamaDingDong

Right now I'm on Benlysta, Imuran, Benazepril, and prednisone. Seems to finally be helping 🤞


Longjumping_Plan_829

I was looking at Benlysta as an option. Did not like imuran tried it after cell cept which worked well may go back to that but was thinking of having another baby so the imuran was started but I stopped taking. Had chunks of my hair fall out and GI issues. Glad that you’re on a good regimen now


MrsLlamaRamaDingDong

I was super scared to try imuran since I had SUCH a bad time with cellcept/myfortic. But I've lucked out with the imuran. Hope you also find something that works well for you!


eye-eye

I will be going to my first rheumatology appointment in 12 days ( but who’s counting!) with similar blood work. I have NEVER had a positive ana, though I do have anti-thyroglobulin antibodies and anti-S antibodies (though I guess those aren’t really autoimmune). About 4 weeks ago my gp ordered some general autoimmune labs and my ana was again negative but the dsdna was high at 25 and my esr was high as well. I have a long history of debilitating but nonspecific symptoms, but finally I have some blood work plus joint pain and swelling to point towards a diagnosis. I will be interested to know what your further testing reveals and what your rheumatologist makes of it. I wish you the best


Holadama0526

I have my rheumatologist appointment in 3 days, my ANA was again negative, my DNA (DS) antibody still at 11H, only new test is the RNP antibody at 1.5 POS so I’m anxious to see what the dr tells me 🤷‍♀️


Longjumping_Plan_829

Apparently 97% of people who have lupus have a positive ANA. Source: https://www.lupus.org/resources/lab-tests-for-lupus Just because the statistic is so high doesn’t mean that it’s not possible. A negative ANA result suggests the absence of many autoimmune diseases, but does not rule them out. Additional testing, for example with specific antibody tests, should be considered if clinically warranted. Source: https://www.aafp.org/dam/AAFP/documents/about_us/sponsored_resources/Quest_antinuclear_TestGuide_20170717.pdf Based on your symptoms described and the DNA test you most likely have lupus. Lupus is known though as the “great imitator” so I’d make sure you got more thorough blood work. I was originally diagnosed with Sjogrens and RA, turns out it was just Sjogrens and Lupus. Unfortunately after 3 years trying different treatments I found I have lupus nephritis so the lupus was affecting my kidneys so I wish I knew but it is what it is, just make sure to have your doc do all the autoimmune disease tests which seems like they are. I know mine ran my C3 and C4 complement levels among a few others including the ones you posted. Best of luck and hope you’re pain free bc this shit sucks!


ericakross

Your first statement is incorrect. 97% of people with lupus have a +ANA NOT 97% of people with a +ANA have lupus.


Longjumping_Plan_829

Thank you! Yes I meant to write it that way