Can i get a negitive AnA test and still have Lupus. My baseline test is always positive, but the SED is negative??

Renee, hello. Sorry, but I'm not sure from your post whether your ANA is generally positive or negative. Anyway, that said---

My big-city drs. told me that 95%+ of people (roughly) with SLE (meaning classic systemic lupus) are ANA-positive; that (roughly) 2/3 of people with SCLE (subacute cutaneous LE) are ANA-positive; and that perhaps only 50% or so of people with DLE (discoid lupus LE) are ANA-positive.

But there are many "rubs" regarding ANA. For starters, ANA can be positive in a variety of diseases/conditions, not just lupus; and it can also be positive simply due to age, a family tendency, a passing virus, etc. And I *think* ANA can fluctuate with flares; and I *think* labs vary a lot, both in quality & the actual ANA tests they use.

In short, testing either ANA-negative or ANA-positive *one single time* sure doesn't prove much, especially if your health problems persist. Further, there are many other more specific autoantibody tests available that go way beyond more basic blood tests like ANA & sed rate, e.g., anti-ds-DNA, anti-Sm, anti-Ro, anti-La, anti-RNP, RF, etc. (And those are only a few!) Also, there are skin biopsies with immunofluoresent stain testing, valuable for people with skin rashes that are possibly lupus-specific rashes.

Have you read the ACR diagnostic criteria for lupus? They're listed on one of the sticky posts at the top of the thread list. You must meet at least 4 of the 11---over time, not necessarily all at one---to be Dx'ed with systemic lupus. For lesser forms, such as SCLE and DLE, you may meet fewer than 4.

Is your dr. a rheumatologist? Have you ever had skin rashes that could be tested by a dermatologist or dermatopathologist? What kind of health problems have you had? Anyway, I hope you post more when you can. Bye for now. Best wishes, Vee

Veej

Thank you sooo much for responding. Your information has given me so many different leads to follow.
No i have not read the ACR diagnostic criterias as of yet, but you can bet i will today. i have been diagnosied with severe fibromayalgia and polyarthia ( sorry for spelling). But lately i have had a lot of immune issues, such as i have all of a sudden have food and medication allergies. I have had some hair loss and skin changes, and systemic joint swelling and and high increase in the level of pain.
I do have a lot of lupus symptoms , such as the butterfly pattern on my face if i have been in the sun, i have a non-scaley red ( not really a rash) markings on my upper chest area.
I am just at the frustration point, wether it is lupus or not , i would like a Dx so i can start treatment. And , to be honest i am also frustrated , because as a nurse i feel i should be able to find the answars and start my healing.
Again, thank you so very much.
I knew there were still nice people out their.
:angel:
Sincerely
Renee:

Renee, You could also look in your local library for the most comprehensive lupus hardcovers, by (1) Dr. Daniel Wallace, &/or (2) Dr. Robert Lahita. And when you've commited the biochemistry chapters to memory, you can explain them to us! :D Seriously, with your being a nurse, you'll take to the material better than I did when I first started reading such material.

I honestly don't think a dr. has the time (and many don't have the wherewithal either) to explain even the basics during the typical consult. It's just so complex. Let us know how you're doing, OK? Best wishes & hang in there! from Vee

P.S. You could also browse old posts here. V.

Hi this is my first time to ever talk to anyone on a board. I was diagnosed 2 years ago with SLE and for the life of me I can't seem to go into a remission for any length of time. My thyroid is damaged, jonts hit, lymph nodes tender and swollen and most persistantly my heart gets pericarditis. The pain, chills and fatigue are relentless. I am on prednisone constantly, mobic, and colchicine for the inflamation. The side affects of these drugs are troubling to say the least. I am trying to do mainly organic low fat foods. Do you have any suggestions for me? I take some vitamin suppliments as well.

Troman, Greetings! Welcome! I've never had pericarditis (my sister's friend gets it), so what follows will probably show my ignorance. Do you see a cardiologist for it? Or your rheumatologist? Was bacterial infection ruled out? I read that treatment for pericarditis, when it's NOT bacterial, can be colchicine, plus high-strength anti-inflammatory like Mobic---which makes me think your doctor believes it's not bacterial.

When you were first Dx'ed with lupus, were you put on some "baseline" ongoing med, like Plaquenil? Many people take it ongoing, then steroids (etc.) are added & d/c'ed as warranted. The hope is that taking it ongoing will reduce flares, by helping to suppress autoantibody production.

Do your thyroid problems (hypothyroid?) "qualify" you for a med like Synthroid? My sister had hideous body temp fluctation, severe sleep problems, etc.; but she's doing much better since her endocrinologist put her on Synthroid.

You could start a new thread of your own, by the way, by clicking the "new thread" button on the main page; then create your own title. That way, people who know more about recurrent pericarditis will notice your post right off & get back to you with more useful thoughts. I sure wish I had more to offer. I hope you keep posting here. Bye for now, with my best wishes to you. Sincerely, Vee

Troman, my big sis called, so I asked about her friend who kept getting pericarditis. Interesting what she said! The root cause of her friend's pericarditis was thought to be hypothyroidism; to control it, her friend needed to control her thyroid problem. (This worked, by the way.)

My sis & I are only patients, of course. But we thought up questions we'd ask our doctors, if we were in your shoes:

1. Is it true that EITHER lupus or thyroid problems can cause pericarditis?
2. Are there any OTHER possible causes that might be germane in your case?
3. What test(s) determine the cause?
4. If the cause is eventually found to be something OTHER THAN lupus, would that suggest the need for some different treatment approach than the ones you've been trying?

Anyway, my sister says to tell you "HI & GOOD LUCK", and ditto from me. Let us know how you're doing, when you have the time, OK? Best wishes, Vee

Hi this is my first time to ever talk to anyone on a board. I was diagnosed 2 years ago with SLE and for the life of me I can't seem to go into a remission for any length of time. My thyroid is damaged, jonts hit, lymph nodes tender and swollen and most persistantly my heart gets pericarditis. The pain, chills and fatigue are relentless. I am on prednisone constantly, mobic, and colchicine for the inflamation. The side affects of these drugs are troubling to say the least. I am trying to do mainly organic low fat foods. Do you have any suggestions for me? I take some vitamin suppliments as well.

Hi. This is my first time to a Lupus forum too. I was diagnosed with SLE in May 2007. The "good news" was I had so many of the criteria, there was no mistaking my dx. The bad news, I was in kidney failure... They started me on Chemo to suppress the flare and jump start my kidneys (had 4 rounds instead of 12 I was told initially), along with 80MG of prednisone for 3 weeks. Was supposed to taper down to 60MG, 40MG, over next few months, but had a "bad reaction" = psychotic episode & BP 240/120 not to mention the 50 lb. weight gain from the prednisone. Also had water on heart & in lungs. (Couldn't walk with all the water & couldn't get rid of water without walking.) I have SLE stage 4 membranous, Stage 3 kidney disease, Arthritis, & Reynaud's Phenomenon. After the "bad reaction" they lowered my Prednisone to 15MG daily (now 5). I take Hydroxychlorquine & Cellcept to suppress my immune system to keep me in remission. I'm sorry I'm so long winded... Just really excited to have ANYONE to talk to about it. Everyone thinks because your out of the hospital you must be all better. Best of luck to you!:)
Melissa

Troman, Greetings! Welcome! I've never had pericarditis (my sister's friend gets it), so what follows will probably show my ignorance. Do you see a cardiologist for it? Or your rheumatologist? Was bacterial infection ruled out? I read that treatment for pericarditis, when it's NOT bacterial, can be colchicine, plus high-strength anti-inflammatory like Mobic---which makes me think your doctor believes it's not bacterial.

When you were first Dx'ed with lupus, were you put on some "baseline" ongoing med, like Plaquenil? Many people take it ongoing, then steroids (etc.) are added & d/c'ed as warranted. The hope is that taking it ongoing will reduce flares, by helping to suppress autoantibody production.

Do your thyroid problems (hypothyroid?) "qualify" you for a med like Synthroid? My sister had hideous body temp fluctation, severe sleep problems, etc.; but she's doing much better since her endocrinologist put her on Synthroid.

You could start a new thread of your own, by the way, by clicking the "new thread" button on the main page; then create your own title. That way, people who know more about recurrent pericarditis will notice your post right off & get back to you with more useful thoughts. I sure wish I had more to offer. I hope you keep posting here. Bye for now, with my best wishes to you. Sincerely, Vee

I'm sory it took so long for me to get back to you. I am having a hard time figuring this board talk out! Sheesh! ADD! Thank you so much for your wisdom and encouragement. Yes I am on 7 meds for all my issues. Plaquinil, prednisone, synthroid, colchicine, mobic,elavil,etc.etc. I am starting to find some real benefits from nutrient dense foods and cutting back my stress load. I seem to be in remission presently. I have had the flu for 4 days now and the only sign of lupus I have, is a rash all over my arms. This is good!!! I have to tell you, I have avoiding talking to others with lupus and when I finally found these replies, I wept. Thank you. from my heart

Hi mfarmer. Are you a farmer(grin), because I am! Thank you for your reply. It took so long to get back to you, bcause I have ADD with the lupus. It sounds like you have been through so very much. I too gained a lot of weight from the meds. I believe we have a love hate relationship with steroids. Presently i am feeling well except for the flu. It's a sad day, when the flu is nothing compared to lupus. I hope you get through this season of infectious diseases without picking everything up.

Thanks. I'm glad you found some people on here to talk to. It sure makes a difference. The Lupus Foundation also just started a forum about a month ago. Sorry I haven't checked this in a while, my grandma has been ill & in and out of the hospital a lot these past few weeks. Hope your flu is gone!

Hi mfarmer7, I am doing well now that the flu is over. What is amazing is that I did not have a flair up with lupus! All I seem to have presently is a rash all over my arms. Do you get rashes from the lupus and have you had a biopsy done? Sorry to hear about your gram. Hang in. troman:angel: