I was just recently diagnosed with what as of rn my doctor is calling lupus since i seem to have a lupus-like disease. Im just a bit worried and confused about my diagnosis bc many people seem to have such extensive blood results however my doctor diagnosed me based on clinical symptoms and only a positive ANA. She did order more tests which im currently waiting for but some results came back and my C3 and C4 levels are in the normal range. Still waiting on my double stranded dna test. Most of my clinical symptoms do mimic lupus however the rash i consistently get is red, burning and sometimes with hives and only lasts about an hour. I mentioned that to the doctor and she seemed to still think its lupus since i have other symptoms such as mouth ulcers, joint pain/stiffness, hair loss, fatigue, light sensitivty to my eyes, and fingers go cold and numb from exposure to cold (but dont turn white). She said even if my other blood tests come back fine, my clinical symptoms and positive ana are enough for a lupus diagnosis but im very confused and hesitant bc of my rash and my complement levels and everything else being perfectly being fine Including white blood cells and ESR and other regular things they check for. She did mention she believes this is my first proper flare and the disease is in the early stages so is that why my blood results may not be showing signs of lupus yet? Are clinical symptoms + a positive ANA enough for a lupus diagnosis?? I know none of you are doctors but any insight would help! Shes also started me on hydrochloroquine right away.
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aimenkhattak27
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The diagnosis of lupus/SLE is a complex business, and the average patient takes at least 6 years to get a definitive diagnosis. It is possible that your diagnosis isn't exactly SLE, but it sounds as if your doctor has good grounds for assuming you have a systemic autoimmune disorder related to it. Starting you on HCQ also sounds a reasonable thing to do, as it is a well tolerated drug, with few side effects, that is used in a wide range of autoimmune conditions.
If you haven't already read them, the free LUK leaflets on the "Home" page here give a really clear overview of symptoms, diagnosis and treatment. If you want the detailed clinical guidance, it's here academic.oup.com/rheumatolo...
Thank you for taking the time to read and reply! I’ll definitely check out the link you posted. I guess you’re right, id rather begin treatment now then wait later and it seems my rheumatologist was really confident so i guess i just got lucky with an amazing doctor!
Your doctor sounds just like one everyone should have: knowledgeable, tuned-in to lupus symptoms, awareness that prompt treatment is necessary, and *crucially* that only one blood indicator is enough to point to lupus. Some people are seronegative, which can lead to years or decades of frustration and no diagnosis, and dsDNA antibodies can vary over time, not be detectable or become positive a long time after onset.
It's a wonderful thing, a doctor explaining their thinking...from reading many posts here not many people benefit from that.
You can reassurance yourself by looking at the docs linked by whisperit that she's doing the right thing (look at the tables in the BSR guideline)....and if it is confirmed as SLE or a related autoimmune condition, then an early treatment plan is very helpful, even if the diagnosis is a shock...but this forum is here to help!
I must admit i was so relieved with my diagnosis since ive been feeling like i was literally going crazy and when she told me i had lupus i felt like i wasnt imagining it all anymore. Thanks for the reassurance, i guess im kind of in the denial stage of the diagnosis so this will take some time. I have a 3 month follow up with her in september where she said we’d sit down in person (this one was over the phone due to covid) and discuss things further including my new blood tests and xrays she ordered.
It’s a measure of how things are with autoimmunity, that many folks’ reaction to diagnosis is relief, given they’re horrible conditions, and it takes a while to come to terms with it, but this forum is the place to be! Stay safe, be well. Xxx
So relieving to hear someone else also has normal blood tests. I guess it is more of the fact that i have a really good doctor who listened to my symptoms closely. Thank you for making me feel less alone!
I will take a shot as it. Some rheumatologists would say an ANA should only be run if the doctor is highly suspicious of lupus. It sounds like that was true in your case. The ANA was a confirmation for the doctor for what he/she already highly suspected. So your symptoms were very specific to lupus, I would guess.
That is my take. You will have all the appropriate tests done in time, I am sure. Sounds like you have a good doctor who was very alert.
Hi. Is your doctor a rheumatologist? Even though there are some very intelligent primary doctors out there, you should see a rheumatologist for a lupus diagnosis. Your complement levels can be normal and still have lupus. A positive ANA is one of the requirements and then the other requirement is another abnormal blood test usually a positive double stranded DNA, anti-RNP, or anti Smith and 4 out of 11 diagnosis criteria. I hope they get to the bottom of your problems. I wish you nothing but the best of luck in your health journey. Take care, Nan
Hi, yes my doctor is a rhumetologist, also i got my double stranded Dna back and its negative and she didnt test me for the other things i guess because her diagnosis of lupus is despite the double stranded DNA tests
Wow I’ve never heard that before. I hope they get to the bottom of your problem because I know it’s horrible having symptoms and them telling you there’s nothing wrong. Take Care
I also have normal bloods for CRP, ESR and most of my blood counts. Quite a few of us do. If there is any alteration in the Rheumatologist's diagnosis, it will probably be to call it Undifferentiated Connective Tissue Disorder (UCTD, which many of us here have and we tend to use the term Lupus to describe it to others anyway). It does seem a bit early, as my Rheumatologist didn't name my diagnosis definitively for over a year. She called it 'Possible UCTD', then 'Probable UCTD' first. However, the first port of call was the same -- Hydroxychloroquine -- with my positive ANA and Ro+ result. It is a drug that can take 6 months to get into your system to be helpful. So this is wonderful for you to have a head-start. Should you be lucky enough that things change and the ENA panel and dsDNA come back negative and you feel better, then they can stop the Hydroxy.
I hear you on the denial and the shock though. And the relief. All part of the diagnosis process. You're in the right place for support and all your questions. This is a wonderful website.
Could we please have the name of your doctor? HE/She sounds a great doctor, as lupus is very difficult to get diagnosis. It seems that you are very fortunate that you have a doctor who considers it and knowledgeable on lupus. Besides the initial treatment is less complicated, in my view. Hope you get better, Lx
I only have positive Ana and symptoms. I've been diagnosed with UCTD but am also on hydroxy. I don't think the label matters too much as when I'm at appointments with my rheumatologist she often refers to my lupus rather than my UCTD!! And I think my treatment would be the same whatever label I was given x
Hi aimenkhattak, welcome to the confusing whirl of a lupus diagnosis!. I can echo some of the brilliant replies you've had because I too have been diagnosed on the basis of positive ANA and some other low markers but nothing very specific. I had doctors like yours willing to treat me in this way and I stuck to them like glue. A lot of Rheumy's use Hydroxy as a way of confirming the diagnosis that if it helps then you've got an immune illness . keep a note of symptoms that improve for your follow up in Sept. Will be a good appt then for you, going over resukts and symptoms!.
These open- minded Rheumy's are such a godsend as so many of us on here have had to deal with the opposite over many years!. Me included!. Do keep us posted and I hope the forum is helpful for you. Keep safe and well. Xx
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You are very fortunate aimenkhattak,
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