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Hello,

I am new here. I am 40 years old, diagnosed with lupus when I was 36. At that time, it was a relief to have a name to go along with how bad I was feeling and all of the crazy symptoms I was experiencing. I don't know how many anti-depressants my GP tried me on saying I was "just depressed".

My ANA has always been positive for 4 years. In 2006, it was 1:320 and ended up at 1:1280 six months ago. I was also positive for antiphospholipid antibodies as well. I just had labs drawn a couple of days ago and EVERYTHING came back negative. How can that be? It seems so dramatic for the ANA to go from such a high positive to negative. What does this mean? Do I no longer have autoimmune disease? It is not like I WANT to be sick, but how come I still feel bad? I was diagnosed with fibromyalgia 3 years ago, but I do not think everything can be attributed to that. Or can it?

Has anyone else experienced anything like this? Any input would be greatly appreciated.

Thank you!
If your Lupus is in remission, a negative result can occur. You can even still have Lupus without ever having a positive ANA. Clinical symptoms need to be there, I'm sure. Are you on any treatment (medications) that could make it go in remission? like Plaquenil, anti-inflammatory?

I had a negative ANA one time after many positive one's and had a dx of mild Lupus, but my general practicioner said because of that one test, I did not have an autoimmune disease and I quit going to a rhematologist. He also dx'd depression, fibromyalgia. Well I went many years without it checked and just went to a lab and checked it myself, and my ANA wasn't just positive, the autoantibody to a disease showed up (for MCTD), I had it rechecked at a different lab after they treated me for a mth on medications and that autoantibody decreased by half.

Another dr recommended me doing that, not my primary care doctor. This one said having it repeated at a different lab can prove the significance of the results. I would recommend you have yours rechecked in a couple of months.

Believing I didn't have an AI disease was the BIGGEST mistake I have ever made. I have done nothing but live in misery with this illness because of lack of treatment for it.

I wouldn't feel like I hate life so if it wasn't for feeling the way I do. I didn't get depression until 4 years after I got sick. When they treated it mths back, my mood got so much better, but when they took the medication (because of my ulcer), I pretty much had a nervous breakdown. I couldn't handle feeling better and then crashing back down and my family giving me hell because of.
Hi neveragain,

Thank you so much for your reply. I can empathize with the way you are feeling and I am so sorry for your pain and depression. I think there is so much overlap with autoimmune disease, fibromyalgia and depression that it is hard to pinpoint where the symptoms originate.

I have been on Plaquenil for 4 years, but have still had the increasingly high ANA during treatment. We just moved from CA to TX and I loved my rheumatologist there. He tested my blood through the independent Sharp Labs or Lab Corp many times and my ANA was always positive. The couple of times (including this time) where it was flat out negative was when my blood was tested through Quest. I know that they did the IFA w/reflex, which always turned up high positive before. Does that mean that Quest was not complete in their testing? It is so frustrating!! I really don't care for Quest--the lab techs have always been rude and their billing department is a nightmare. Maybe they have incompetent people working for them.

How do you go about testing through another laboratory? When I go back to my rheumatologist in 3 months, I will inquire about that. I know I would not be able to afford the ANA test independently without insurance.

Take care of yourself. Thank you again.
I can't say Quest wasn't appropriate with their testing. I don't know. But there can be false negatives that occur in ANA testing. I would just have it rechecked again to be sure of the results. My guess would be that your Lupus may be in remission. Lab Corp is the lab I go to, but I have to use a different lab online in ordering the test. I can get it done for around $60 without using my insurance, but it only shows if the ANA is positive or negative, and if you have an autoantibody present, it will show how high that is. Some labs charge $500 for the ANA Panel, I really don't know why one is so expensive and others aren't. Maybe the one so high tests all autoantibodies. The one I have done tests for things like this: (I'll share my results):
ANA w/Reflex
ANA Direct Positive Abnormal -- Reference Range: Negative
Anti−DNA (DS) Ab Qn 1 IU/mL -- Ref Range 0-9
Negative <5
Equivocal 5 − 9
Positive >9
RNP Antibodies 7.3 High -- Ref Range 0.0 − 0.9
Smith Antibodies <0.2 Sjogren's Anti−SS−A <0.2 -- Ref Range 0.0 − 0.9
Sjogren's Anti−SS−B <0.2 -- Ref Range 0.0 − 0.9
-------------------------------------
Flag:
ANA Direct Positive Abnormal
RNP Antibodies 7.3 High

You should be able to use your insurance at a different lab (if not - ouch), I can go to any lab I want with my insurance.

I took Plaquenil back in 2002. It alone did not phase me in how I felt. Mobic pretty much gave me some of my energy back and made me feel better. And I took an anti-malarial antibiotic with it part of the time. Does he have you on an anti-inflammatory medication too? Maybe Plaquenil just isn't enough to help you feel better. I think Rheumatologists pretty much give you prednisone during bad flares, don't they? My Rhemy never did try me on that.
Thanks for sharing your lab results with me. I appreciate all the time you have spent on answering my questions. I tried Mobic, but that did not work for me (I actually think I had some bad side effects on it, although I cannot recall what they were). I have tried a lot of different medications over the years and unfortunately, I am very sensitive, allergic or have had bad side effects from most of them. My new rheumatologist just prescribed Relafen but I haven't filled it yet because she told me I would not be able to use Motrin--and Motrin has helped me more that any other anti-inflammatory in the past. I hate filling prescriptions that I don't use; it is such a waste of money.

My fibromyalgia pain was so horrible last night. When it becomes like that, even my skin hurts when lightly touched. I had to take extra Lyrica as well as extra Motrin. I am not sure what set it off. Changes in weather tend to be a frequent culprit, but it is just plain hot here--nothing different. Stress and hormonal changes kill me as well.

Anyway--thanks again for your input.
from my experience i have never trusted quest my labs have always come back off i normally trust l ab corp in north texas they have been good... i hope you have yourself retested.. good luck
Hi AmyTx,

I will have to look them up. We are north of Dallas. Thanks for your input.
I talked to a couple of women recently with MCTD, said both their ANA & RNP lowers with taking plaquenil and prednisone. So I was right it can do that. LOL. Weather change doesn't bother me nor am I sensitive to the touch but sure am with a punch (my daughter's becoming an expert of doing that), she thinks she's funny. But my mom has that kind of pain, for her it's osteoarthritis related. I have always heard people who are affected by weather change have arthritis. Makes them hurt when it rains for some reason.
Hi, Texasmom

I was curious as to why your dr. has repeated your ANA so many times? As has been the case with many of us on this board, it often takes a while for the ANA to show up positive. Mine took 10 years...and my first symptom immune mediated thrombocytopenia. I had hugely high levels of anti-platelet antibodies, but no ANA. Once my ANA did turn positive, though, that was it. It cinched the dx of SLE and I haven't had the test run since. There are other markers for disease activity that I [I]am[/I] serially tested for, but ANA is never one of them. Has your dr. shared with you why he keeps re-running that test?

Also, has anyone else on the board had serial ANA's run?


Take care!
Michelle in CA

SLE, APS, Sjogren's, hypothyroid, teenage daughter.... (just kidding!)





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