Thank you Phillip, I’ve read most of these I just can’t get my head around how it’s postive with Elisa and negative with cliff.
Then this “ The presence of anti-dsDNA antibodies often suggests more serious lupus, such as lupus nephritis (kidney lupus). When the disease is active, especially in the kidneys, high amounts of anti-DNA antibodies are usually present.”
Anti-nuclear antibodies (ANA) are autoantibodies to the nuclei of your cells. 98% of all people with systemic lupus have a positive ANA test, making it the most sensitive diagnostic test for confirming diagnosis of the disease.
Most definitely, they knew I was suffering from some sort of autoimmune, because I had a raised positive ANA, they were suspicious of lupus because of my symptoms, suddenly my anti dsDNA shot up and became positive ( 17), lower than yours, as far as I know I didn’t have any of the other positive bloods bar crp and esr which are general inflammatory markers. So in answer I was diagnosed with almost identical blood markers as you, and because you’re anti dsDNA (which is specific to lupus and indicates a more serious strain) your doctors will take no chances and because they’ve prescribed steroids it is clear they’re not. I think it’s safe to say you have SLE. But also a great medical team, which many don’t have. Ask anything, if I can help I’m glad too. Terri X
Thank you Terri, that’s confident that you got diagnosed based on your lab tests. I’m guessing the higher the raised results the more active the disease is? Could I ask what medication they placed you on after and how are you coping since then any complications or how are you generally feeling. I just really hope it’s not affecting my lung. I think I’m a little nervous about tomorrow’s CT SCAN! Xx
Of course, ask away Stacey. They started me on steroids, a high dose, then plaqunel (sic), then sulazapyrine becaUse my bowels started to affected, my consultant wanted to see how my (unconfirmed at that stage) disease reacted, the hydroxidie (plaqunel) was a game changer. Then my kidneys started to show signs of being affected, so they stared me on rituximab , my disease was being called unconnected tissue disease - which is very common while waiting for antibodies to confirm which Autoimmune I was fighting,then bingo AnA ans dsDNA popped up, and although my consultant was 90% sure due to symptoms, he was then able to officially dx SLE and apply for funding for my Biologics (rituximab). I suffer in between drips ( twice yearly), and my brain is affected as in seizures but not grand Mal’s just backfire of neurons apparently AND that is very rare as neuronerd and Kay will tell you. I’m getting my treatment on Friday. So to summarise, they start you on pred, add in hydroxie, then there various Immunosuppressants, after that if there is kidney or major organs involved they will (hopefully) offer Biologics (rituximab). This is my experience, I realise I’m very lucky in the sense of treatment etc but I’ve also had the hideous doctors who think you’re mad before my rheumatologist took over. Terri X
Anti-nuclear antibody test (ANA) is positive in almost all patients with SLE.
Anti-double stranded DNA antibodies are frequently present, may be associated with kidney involvement and the level can fluctuate with disease activity making this a useful test to monitor.
Just the cliff test I’m unsure off why that was negative x
I think you can feel confident that the doctors you have already seen have interpreted the results in light of your symptoms. Your symptoms were not vague. I think they were looking for confirmation of autoimmune disease, and that is why they did the ANA. It is hard not to second guess your doctors but, in your case, they all agree lupus is likely. It is hard to imagine they would start you on prednisone without being confident you have an inflammatory illness that needs immediate treatment.
You may have other labs that lead the doctors to think you have lupus. I believe you said the rheumatologist was consulted by phone. They would have looked at all your labs and signs before telling the emergency room doctor that it appeared to be lupus.
Hang in there. Try not to doubt too much. So far there doesn’t appear to be much difference of opinion.
Thanks Kay, I think I’m just driving myself insane, as I’ve read so much information and stories and I really just want an answer of what it is and not be second guessed when I see someone it that makes sense, been a long time coming I guess! I hope you’re ok xx
We all do that. You seem pretty clear cut actually, and there is agreement about likely diagnosis. Doctors usually air in the opposite direction, and they won’t give a diagnosis of a chronic illness unless reasonably certain.
Get all the information you need to feel in control. These illnesses are not easy to understand. Your doctors seem very on top of things and trying getting you good care.
Feel free to ask questions of your doctors. Try to remember you are the most important person right now. You are the one grappling with a lot of new knowledge. Everyone else’s sole purpose is to help you.
Thank you, everyone I’ve spoke to professionally has had the same views, I just get concerned I see that one rheumatologist and they doubt it all lol because I’m so used to it I guess, I will know what’s happening with my lung more hopfully Tuesday morning as my CT is Monday evening and my consultant said she will call me. Thank you thought for your advice and comments. It’s just very hard not knowing what your up against going forward that’s all I think xx
I know it is hard after your past experience, but your illness has evolved to where they all seem reasonably certain about what it is happening. I would be very surprised if all these doctors, including the rheumatologist on call, were wrong.
You’ll probably see the same rheumatologist. 😅
By the way, from your list, you have more than your labs and lung issues that are consistent with lupus. If they saw the rash and ulcers, that would also be significant. It is all complicated, right?
I agree, I think I’ve just read so much where people are still battling getting a diagnosis and I’m worrying I reckon so, the call I’m guessing with the doctor who spoke to the rheumatologist so it will be the same hospital.
I’ve literally toke photos of the patch on my stomach it’s still there but smaller. ulcers I had a few weeks ago when I wasn’t feeling well which I didn’t think much at the time to be honest, I am starting to write a list of everything that has cropped up, plus all my tests and the lung issue, hopefully it will all make sense xx
Thanks Phillip, so does my results could be affecting my kidney function then if my presence of dsDNA is raised 19 range of (0-10) thanks Phillip. Sorry for all the questions.
That is very interesting Phillippo, ive never heard of that, I’ve been tried on humira, and remicade, I’m very lucky to have the funding. My kidneys are doing ok (touch wood)
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The lack of understanding of work colleagues
Off work feeling guilty
Struggling to manage work with Lupus
Have to go back to work
SO WORRIED WHETHER THE VACCINE WILL WORK!! 
