Lupus panel and kidney question

[gonebananas83]

Can Plaquenil cause a normally positive anti-dsdna to be negative? Reason I ask is bc currently I'm in a bad flare. My c3/c4 (c3-61.5, c4-5.1) are low and they re-tested them two more times within a month and they're all low. Within that time frame they had me do a 24 urine bc they were concerned of kidney involvement. Sure enough I had 450 mg (I think it was mg) protein in my urine, cutoff was 150 so it was high. Now they want to send me to a nephrologist. Then during this same time frame I started having heart problems. I'm only 35!! This all happened so fast too. But by the way, I keep getting negative lupus tests during all of this. Why? For one I've never had a positive ANA. But I have had four or five positive anti-dsdna's in the past 2 years, which is how they ultimately diagnosed me (plus all the symptoms). But why, during this really bad flare up when it's affecting my kidneys, possibly my heart and it's presenting in my complement levels, would it not appear in the lupus panel such as the anti-dsdna or any of the other lupus tests? Is it bc since I was diagnosed they put me on Plaquenil? This doesn't make sense to me. When I did test positive it wasn't very high in the first place. Say the cutoff was 27... The highest I ever tested was within 10 of that. They are rechecking my 24 urine just to double check, the spot check on my single UA yesterday showed a higher result of protein at 19.2. Last week the spot check was 15. So in a week I'm going to redo the 24 hour urine. So basically I have two questions, Is that amount of protein that bad? And the question about the Plaquenil and lupus panel tests. Thank you.

[ecc_active]

Hi gonebananas, not sure if this will answer your question but it is very possible to be in a flare and not have a positive ANA. I have never had a positive ANA (maybe once?) in 12 years with lupus and mine is lupus nephritis so kidney involvement. Wasn’t positive before Plaquenil and isn’t positive now. My nephrologist said it's very rare but some people will never have a positive ANA in lupus known as ‘negative lupus’. Similar to you my complements are low atm, but still ANA and Ds DNA’s negative. I’m also young, just turned 28 and appreciate what you are going through. So in short, I guess I wouldn’t get too hung on why you may or may not have a negative ANA, this disease is just so individualistic....I hope everything goes ok seeing a nephrologist, they may well do a biopsy to check what’s going on/severity but they’re not that bad....good luck with everything!

[KayHimm in reply to ecc_active]

Just to show how right you are, I have a positive ANA without anti DNA or low complement. I have « lupus-like » disease or UCTD. The lack of anti-DNA and low complement are the reasons my doctor does not call it lupus. So it does not surprise me that two of you here have a negative ANA with kidney involvement and do have lupus. It is always the total picture.

[KayHimm]

These tests are crazy, right? You really do not have negative « lupus » tests. Only your ANA is negative. Your complement is low — must be characteristic of lupus specifically because my normal complement biases my doctor against lupus — and you have anti dsdna. These tests are diagnostic. After the diagnosis is made, the main thing is preventing and treating symptoms. They are evaluating for disease activity. Ask your doctors what they think in your case reflects disease activity. It could be your low complement, anemia or other labs. Hope your tests come out fine. K

[Melba1]

Hi, sorry to hear you've got all these problems from your lupus. Hopefully they'll get to the bottom of it quickly and once you start immunosuppressants you'll feel a lot better.

ANA and dsDNA are very variable, some people's will never be positive, some always, some will increase in line with disease activity and some will vary but not related to how active the disease is! We are all so different that it takes a while to figure out your own personal bloods and symptoms. In some people, Complement is very related to how active the disease is (unless you have a complement deficiency from birth then it's always low) so a decreasing complement - from your normal because again everyone is different - is an indication that it is being quickly used and deposited in your body. An SLE professor explained it to me that it was like a house filling up with rubbish bags and most people have a bin lorry and several binmen regularly collecting their rubbish but for us, our lorries broken down and we only have one binmen who sometimes just gets exhausted by it all - so our rubbish (the complement proteins) is left to build up in our bodies, which causes a lot of our problems.

In my case, my complement level (although CH100 which is C1,C2,C3 and C4 together rather than C4/C3) decreases to very low levels when the lupus is really bad but I've never had positive dsDNA and my ANA has been positive when I'm completely in remission yet negative when I'm in hospital in my most severe cerebral lupus flares. Not many good rheumys use ANA as a marker of disease activity these days although dsDNA is more likely (but not always) to correlate with disease levels in SOME people.

All quite weird I'm afraid but it does become clearer over time! I think protein in the urine needs investigating so it's great you're seeing a nephrologist. I saw a nephrologist this week and she was amazing, explained things very well, so caring. Nephrologists see a lot of lupus patients so she had far more overall lupus knowledge than the other specialists I've seen.

Good luck xx

[Gcart]

Can anyone help I have lupus diagnosed by GP. Positive ANA and dsDN A

No further referral. . Should I ask for a consultant referral. ?

Thanks

[gonebananas83 in reply to Gcart]

Definitely! I wouldn't want to be followed by my gp for rheumatology issues. If both were positive you should be referred or just call yourself and get set up if your insurance allows. Good luck.

[AndrewT]

Dear gonebananas83,

I don't know how much, if any, help/ guidance I can give you here but I'll try. I Don't have Lupus and am Not 'on' many, of the drugs, you mention. However I Do have ANCA positive Vasculitis, which affected my Brain, Heart and Kidneys. I had a Kidney Transplant, in July 2013, after four years on Dialysis- three times a week. Hopefully you can see why, I said that I, 'Might Be Able', to help you.

I can 'Talk' about Kidney Problems generally, types of Kidney Damage, Dialysis and Transplant Surgery. I can also offer you, information on, 'Signs' of Kidney Failure and Related information.

If you think, that I Can be of any help to you, then please do reply to me. If not my Best Wishes are with you.

AndrewT

[gonebananas83 in reply to AndrewT]

I'm so sorry for your struggles. I appreciate your willingness to help. I'll find out more about my kidneys soon hopefully. It always seems like it takes forever!