Does anyone have "negative-ANA lupus"? I have not been diagnosed but have many classic lupus symptoms (and I also have low thyroid and Reynaud's). I'm in a severe period of fatigue and stiffness/soreness. My ANA is negative and my C3 and C4 are below normal range. My doctor hasn't ordered CBC or chem. panel yet; I'm hoping she will. I'd just like to get a feel for how likely a negative ANA diagnosis may be. Thanks.
Yes - my ANA was negative, but I haven't retested since the initial test. However, my diagnosis was determined through a skin biopsy and other criteria for diagnosis (primarily extreme UV sensitivity leading to an episode of subacute cutaneous Lupus). In the more recent years I have also experienced pain and stiffness in the joints and muscles and extreme fatigue and depression. I also have Type 1 Diabetes and Alopecia Totalis...my doc says I'm likely to be diagnosed with other autoimmune disorders in my lifetime. As a matter of fact, my rheumy is currently considering a diagnosis of Reynaud's (I was sitting in my family doctor's office yesterday, with my socks and shoes off and I watched my feet turn white(r), then purple). I wish you the best of luck in getting your results and the best of care for you!
I have ANA test 6 times in last four years and had 2 positive and 4 negative it depends where you are in a flare or something is what my dr said
I was also diagnosed with almost every other criteria met and biopsies but my ANA repeatedly will be negative. i have a whole list of autoimmune disorders and syndromes: Raynauds. Sjogren’s (biopsy confirmed), Celiac, RA, Antiphospholipid Antibody. The rheumy who diagnosed me with SLE passed away in 2008, & the new rheumy refused to say I had Lupus fir the longest time. she said I didn’t meet enough of the criteria …say what??? well now that shes been seeing me for a few years she has been putting down my dx as Lupus. seeing is believing I guess, however my bloodwork has been pretty close to normal, probably first time in my life. but ANA? Negative almost all the time. Go figure?!?
I have also been testing negative on my ANA for close to a year now but have also been having a flare for about the past month! Saw my rheumy on Friday and asked him why and he told me it was because I have Lupus. (do ya think!) Seems more common than I thought! All of you say the same thing. Wish we had a doctor that knew what they were doing and could really help us! There was a post a few weeks back about Hamstring pain. A few people posted that they experience the same thing. I also asked my doc about it and he said nothing. I have been with pain pretty much constantly for about the past 4 months - sometimes it's so bad I don't want to walk. Does anyone know what this really is? Or is it just another "symptom of Lupus"?
I have never had a positive ANA it has been a struggle to get a diagnosis. I finally got a firm one once I did a brain spect and it confirmed CNS lupus due to abnormal brain activity. I wish it didn’t have to wait that long to get a final dx.
I have negative ANA lupus and low thyroid. When my thyroid issue was helped, it took about half of the body pain ad fatigue away, until lupus decided to attack my heart, so I'm down for the count again. Only about 14% of lupus patients have a negative AA, but it is possible. Some doctors don't believe so. They say "No ANA, NO LUPUS". I hope your Dr. is aware of this. Orv maybe you could Google "Negative ANA lupus" and find a document from a respected source to show your Dr.
Hi, I had symptoms steadily for two years before any blood tests showed positive. Before that, I had symptoms on and off for several years that weren’t bad enough for me to go to the doc except once or twice when one joint (my elbow or ankle) would hurt really bad. I did have a moderate positive CCP test a year before my diagnosis but rheumy number one said it didn’t mean anything because he could not see any joint destruction with his bare yes and rheumy number two said it was because I was a smoker (have since quit.) my ANA test and CCP were positive last month, which finally led to my diagnosis. So frustrating. And I agree with others that no one wants a diagnosis like this but it is nice to finally have some answers and to know that there are treatments available.
Nic
There wasn't really much of a discussion after the one individual that mentioned it and I replied that I had the same problem. No one seems to have the answer. I am going to a new doc September 30 - the UNM Center for Life - I've heard many great things about them - they use Western & Allopathic methods and hope for answers! Just an fyi to this Negative ANA issue - originally I was testing positive - actually on the high side of positive. Was on 50 mg. of predisone per day for close to a year. From what I'm told, Lupus will always be there - and even when you test negative you can still have flares.
NicMic said:
Hello - I am another member who has many symptoms but negative blood work. My symptoms have been affecting me for over two years. I have been diagnosed with Fibromyalgia and Hashimotos however I don't think Fibromyalgia is the answer because I have a very distinct Malar rash and other Lupus symptoms. Maybe I'm wrong.
I understand how frustrated you must feel, however keep being assertive with your Drs to try and find answers for you.
Jan - I tried to find the discussion on Hamstring Pain. Pain in my right hamstring is driving me nuts lol. I would really appreciate it if you could help me find that page.
Has anyone had symptoms for a long time before their blood tests supported a diagnosis? It would be interesting to know whether some people just take longer for blood tests to show positive.
No one wants Lupus but a diagnosis means getting the right help quicker and validates your symptoms.
My family give me no support and think I like going to the Doctor. What a joke! I'd give anything to not be in pain everyday.
Best wishes to you btrunchocolate. You're certainly not alone.
Nic
Jan, I had serious symptoms, even kidney failure with negative blood work for 11 years. Then one Dr. diagnosed me based on the "11 out of 20 symptom list."
This is why I love this site so much! So many wonderful people - all of us offering information to others. We may not have "answers" to the why's but it's important to know we're not alone. Love to everyone!
Thank you all for your insight and information! :)
I have had four negative AnA test results to date this year, but every time I go for labs, the Rheumy is just not giving up .. keeps testing it .. I, too, have other Lupus symptoms, etc. You are not alone but it is nice to know I am not the only one with this problem. :)
Thanks! Sounds like you’ve got a great doctor
I had a positive ana and other symptoms and high sed rate and lots of inflammation and other blood test results etc. Family Dr said it was autoimmune and mentioned Lupus and sent me to the Rheumatologist. She saw me one time and said my ana wasn't "positive enough" so it was negative! Then she said I have fibromyalgia and pawned me off on the nurse practioner (the fibro expert)! I truly hope she is right. I actually like the nurse practioner a lot better than the rheumy so I am going to continue with her. But it wasn't a very good experience and very frustrating! I am how ever on meds from the nurse practioner and starting to feel better provided I don't do too much!
Someone correct me if I am wrong but Fibro is not really considered an autoimmune disease so should not affect your SED, CRP, ANA. I would definitely go to another doctor (Rheumatologist) because from what I have learned on this site, the ANA could be a "speckled" positive which could mean something completely different .. not sure but go to another doc, definitely! BTW, I was told I had Fibro, too, in the beginning .. I think some docs are just lazy. Hugs, Dee
Yes, some docs are LAZY! Once you get a diagnosis of fibro, they generally don’t look any farther. I have been told that I have fibro and told to just exercise more and I would be running marathons soon. Even with a positive ANA and CCP, my rheumy says I have nothing more than fibro. This despite the fact that I continually get worse. My primary care put me on plaquenil last week. Make them keep looking. I have pushed and pushed for years and I think some of the docs think I am a pain in the a** but I don’t care. I am the only one who will look out for me.
MBPP - you are right .. can you go to someone else? How is the Plaquenil working? I start it in two weeks ... I am overweight ... they used to always tell me the pain was my fault, etc., and I would love to take the blame but I eat like a bird (am Celiac) - not even gluten free bread, etc. Less than 1000 calories a day and 80 pounds overweight. It must be the panic meds I started taking when all of this started - started gaining weight then (8-10 years ago) and seem to have settled where I am (so upset - my boys are tall and slender), but it is what it is .... bought a juicer and going to try green powder (?) ... I cannot exercise - too much pain, unless someone wants to buy me a pool lol... I am right there with you! Hugs, Dee
Yes,
I am ANA neg. According to my doc, approx. 1% of people with lupus are ANA neg. I have had dozens of blood tests and ALL were ANA neg. which caused many of the docs to cease looking for an answer. It took a nephrologist doing a kidney biopsy to confirm lupus. As my doc says the "issue is in the tissue". Lupus is her specialty and she has seen hundreds of patients, I am her only ANA neg patient in all of her years of practice. Unfortunately that meant that I was not receiving treatment for my lupus and have stage 4 nephritis. I have class 3 & 5 lupus (whatever that means) but if you are showing any elevated urine protein or other issues with your urine or blood pressure (they are connected) please see a nephrologist immediately.
I hope this answer some your questions,
DeAnne
p.s. Unfortunately Benlysta is not an option for ANA neg patients, however I have been feeling better with Plaquenil, prednisone, and CellCelpt.
DeAnne .. thank you for writing ... I, too, have been ANA negative each time (blood drawn every 3-4 weeks), however SED & CRP are high and protein in kidneys are 300 - doing second test this week. I have R/A, as well, or P/A, depending on the doctor asked .. or both (which is rare), however, I have symptoms of both so can understand their confusion. I did a really stupid thing, questioning the Lupus since I am still showing neg ANA. When I am not feeling well, I get extremely cold (from inside out); I live in FL; Sunday I decided to sit out in the back yard and relax in the sun for 15 minutes with no hat, short sleeves (again, I was freezing) ... it took about 15 minutes to warm me up. I thought since the sun is such a negative factor for Lupus, and I have a negative ANA test, maybe it won't bother me (have avoided the sun for so now because just a little makes me so tired). Well, it started Sunday night and here I sit Weds at 4:00 am, so much muscle pain shooting everywhere; severe join pain everywhere, skin hurts again, headache will not go away, completely fatigued, etc., etc., etc. no rash (BTW, I do not have typical malar rash, although I turn bright red/purple on cheeks when overheated or in sun even a little). So, I will forge ahead. I did my sun test, albeit not such a bright idea. Not sure where it leaves me. Still doing the 24 hour test again this week and more blood work next week. Starting Plaquenil in two weeks (Rheumy I decided to keep says it treats R/A and Lupus even though he has not officially told me I have it yet), since I cannot take MTX. Am looking forward to the Plaquenil. Was awake and decided to write. I know that whatever I have I have had for years and years ... I can remember my sons playing basketball and have to walk to the gym at Disney in the middle of summer; I would actually have to leave the gym, find a bench and lie down in the shade; this happened multiple times and was years ago.... I am so thankful for this site.