are you non-positive ANA lupies really out there??

Hello everyone! I am new to the forum. I am so happy to have found it and would like to introduce myself and tell my story a little bit. I will start at my conclusion, I do believe I may be needing a new Rhuemmy. But I am not quite sure. I am also looking for other Lupies who have yet to have a positive ANA. In 2004 I had a complete hysterectomy. There was an error, which resulted in months of hospitalizations and another major surgery, going under about 7 times. I say this because it was two months later that my entire system dramatically changed. All at once, fatigue in a manner I never felt set in, joint pain was extreme, and I had two major infections in my mouth. The first Rheummy I saw told me it was sudden menopause, ignoring the fact I was using an estrogen patch. A few months later I had my first bout of pericarditis (inflammation, but no significant fluid). All along I was seeing a neurologist for a peripheral neuropathy with absolutely no discernible cause. I needed to go on temp disability from my job as a crisis clinician, but I was still a single mother of three. When I went back to work, I soon had another bout of pericarditis and my feet, muscles and legs got worse. It was winter then and I started having joint pain more often. It was then I was referred to a the Rheummy I see now. When she started saying things like "stress" and "depression" (because with my honest history I said I had a history of anxiety and depression from which I was treated and stable for years).... At first I began to cry, proving her theory and then I stated my case, I am not over stressed, or maybe I am, but my stress is not giving me this pain and these symptoms. I had worked out daily for years. As a crisis worker I did shifts at all hours, phone shifts from my home. My energy level was always so high. This fatigue was a very new experience. The pain was new too. It was daily and I didn't even understand it was joint pain. Eventually, I had my first of many partial complex seizures. However, they have never "proved" they were seizures. At that point, the brain fog, word find, hair loss, rashes, mouth sores, all of it, stared. When she put me on prednisone, I becuase extremely anxious and a little paranoid. Thankfully, I realized it and told her. Plaquinil is a Godsend for me. One time I went off of it, and I needed a motor scooter or a can to get around.

My Rheummy has told me I should not work. She has told me we should work on my illness and finding the "right treatment". Now I am home and in the disability process. However, she still will not dx Lupus, calling it UCTD. This is because nothing has shown in my blood. I have attempted to bring up the 11 criteria and the fact the blood work does not need to be met, although it most often is. She, being the doctor, tells me I am wrong. I feel as if it is clear I have more than 4 of the criteria; but time when she has done blood work has it shown up. I believe I even read something about the ANA not being positive often when people are treated with plaquinil. Does anyone know about this phenomenon? There are a few reasons having the official dx really matters to me. First is treatment options. She has told me she is treating me for lupus but not giving me the diagnosis. That confuses me and doesn't seem like the best practice. She has thought about methatrexate. I am not exactly wanting this medication. But even on plaquinil I can't work. If there is the possiblility for a remission, I would most likely try it. I am wondering if a second opinion by a specialist may seem right. Based on my situation, I would love some feedback or some personal experiences.

Also, I was sent by her for a full neurological evaluation to ensure my neurologist did not "miss" a Neuro disease. The neurologist found peripheral neuropathy too and said it appears to be from an autoimmune illness, such as lupus.

Thanks for hearing my story! And I am glad to be here..


Christine: Probable SLE, Nerve Involvement: peripheral Neuropathy,, Brain involvement: Cognitive Problems (word find, brain fog, intermittent confusion) Partial Complex Seizures, Anxiety/Depression , Skin involvement: Sun sensitivity, flare brought on in sun, skin rash in sun, Skin rashes, hives, mouth, lip, nose sores, Hair loss, head sores (slight), Joints/muscles: severe joint pain/some muscle pain, Severe fatigue/daily, Vascular: Raynoids syndrome, Hx of Pericarditis x 4, Severe Dry mouth, persistent, Thyroid Disease

(Only blood has been high cholesterol (genetic), One slightly elevated RA factor (which came down), CKT(?) elevated (muscles), and vitamin D deficiencies,

medication: Topomax 200mg (seizures/Nueropahty), Plaqunil 200mg 2 x day, Ultram 50mg as needed for pain, flexaral, pm for feet cramps, Synthroid .50 micro, estrogen patch, Cybalta, 90 mg Anxiety/depression/ leg pain

Hi

I am sorry you are so unwell and so unhappy. Major surgery can be a trigger for lupus as it places great demands on the immune system

UCTD is as valid a diagnosis as SLE.

Undifferentiated Connective Tissue Disease is the term often used for a definite autoimmune connective tissue disease when there are none of the specific markers for any other autoimmune connective tissue diseases. In the case of SLE, formal diagnosis technically means biopsy proven lupus related skin or kidney issues, and either anti ds DNA or anti Sm antibodies which are the only specific markers of SLE.

UCTD is a variant of lupus, if you like, and is treated exactly the same way with whatever disease modifying medicines are needed to get it under control and other meds as needed for any outstanding symptoms. The success of the Plaquenil seems to show that this is a correct diagnosis but not enough. In fact some doctors probably would never have diagnosed at all without bloodwork especially ANA or another antibody like anti Ro. Having an SLE diagnosis means getting insurance is impossible.

It is quite possible that taking Plaquenil could reduce ANA. Many doctors never routinely check for it after diagnosis because it isn't reckoned an indicator for disease activity. Dr Wallace says that the only people who never have a positive ANA eventually within a couple of years are those with anti Ro antibodies or those who have been treated. ANA levels can vary for no particular reason anyway. However there is nearly always other blood work that back up the diagnosis. even if no antibodies. Make sure you have had all the usual tests such as complement and especially the tests for anti phospholipid antibodies which could account for some of your symptoms.

You could get your DHEA levels tested to see if they are low for your age. Supplementing to normal levels can increase general well being and energy. Maybe you have fibromyalgia too, which can cause fatigue and quite often accompanies lupus, or some form of anemia and presumaby the thryoid is well controlled. Anxiety and depression are reckoned disease symptoms these days as well as a reaction to pain and the challenges of life. Many people find an SSRI type anti depressant very useful and some doctors think that people with lupus tend have a problem with serotonin
Adding Quinacrine to the Plaquenil can bring huge benefits without going on to the Imuran or Methotrexate which are the next line after anti malarials. The Quinacrine is especially energising.
It is important to feel confident in your doctor and be able to dialogue about treatment options.

Good Luck
BB

Hi there!!

I am in dx limbo!! It is truly not a fun place to be in. I see that we share a lot of the same symptoms. I have been struggling with joint pain, fatigue, muscle soreness, chest pain, rashes, memory loss, cold all the time although heat and the sun make me feel worse and cause my face to break out in red rash (my doc says that is rosacea, whatever.) and mouth sores (horrible painful nasty ones) for 4 years now. I also get rashes on my arms that just show up out of the blue. I was the picture of health before I had my first child in 2005. Then it was all down hill. In 2007, my primary physician labeled me depressed and said that explained all my symptoms. I believe all my labs came back normal except for cholesterol. In 2008 I had another child and nursed this time which I'm starting to think was a bad call. A few weeks ago I went back because I am doing worse now. The fatigue is unbearable some days and tolerable others and some days I feel fairly good for me anyway. I have really bad weeks, followed by ok weeks. The joint pain is always there, mostly in my knees and neck. My knees always hurt when I bend down or go up and down stairs and they crack as well. This time all my labs came back normal except for a positive ANA. My DR did the other blood tests to determine Lupus and they were negative. She said flat out that I did not have it because of that. I asked about my positive ANA and she said it was probably a false positive. I was so irritated because why would she think that with all my other symptoms. Anyway, I am coming off my worse "flare" ever. I had migraines this time and that never happened before. They lasted 5 days. My neck hurt so bad and was so tense. I think that is what caused the headaches. I was also dizzy and had what you call brain fog. I felt like I was off balance. I was so scared that I might have a tumor that I went to the ER for a CT. It was normal. The ER dr suggested auto immune and believed that all my pain was caused by all the tension in my neck. I wanted to say, "But that can't be doc, my doc says I'm just depressed". I understand your frustration. I have heard that you can still have Lupus without a positive ANA. It is only one of the 11 criteria. I have read a lot about Lupus, but am still too uneducated to answer your questions. I can offer my support. I know what it is like to feel so terrible and have doctors force a diagnosis of depression down your throat. I even accepted that back in 2007 and took anti depressants for awhile and they did nothing for me really. I cannot imagine that depression causes mouth sores, rashes, and makes you where you can't tolerate being in the sun for very long. I'm not a doctor, but that doesn't make sense. I do have anxiety issues and some paranoia. I hate putting that on the new patient sheet because it always seems like doctors can't look past that. I'm labeled the depressed hypochondriac almost immediately.

I don't know if you should look for another Rheummy, I don't know what a good one is or a bad one, I have yet to meet mine. My first appt is July 8th. Maybe we will both get some answers soon!

Hi Christine Welcome ! I am ANA negative most of the time. This drives me nuts because I feel sick as a dog and by golly it should show in the blood. My Rhumey said, "Presently we have no true test for Lupus." I read an artical that said the docs add all the systems and organs that have been attacked and you have to have it for a couple years. I was in the ER one time and truly in so much pain from inflamation in my chest area and then told i was just depressed and in menapause. I cried and said, "YA ALL ARE MAKING ME DEPRESSED!" I was sent home with pain and hopeless. I pray you Christine will find the truth and get treated properly very soon. Hang in there Sweetie!!! Tammy

Thanks for the replies here! I have been off for a while. I can relate to the whole thing about being going to the ER a few times..over and over..and having chest inflammation, pericarditis, ect...sometimes being told all sorts of crazy things for different areas of problems. Most recently I had a Partial Complex Seizure.. or some type of brain involvement (they have not verified seizure activity) and they told me in the hospital I may have had Post Traumatic Stress from an unidentified traumatic event. I actually started laughing at this one!! I was a psychiatric clinician for 15 years when I was in the workforce .. :( I said I had no problem being open to the idea that all of this was caused by a traumatic event...but if so..please get me into treatment because it would be nice if I knew I could at least work on getting better (I also do have history of some trauma in my past which I have gone to therapy for in my 20's, so I realize it is not "easy" to deal with trauma recovery, but I was being sarcastic to their inability to diagnose).. Thankfully, the head of the nuero team came in and I mentioned the whole trauma "theory" to him and he said he didn't think that made any sense at all. I then learned I had been speaking to an intern and felt just a little bit better, I suppose.

I am also an ANA neg. lupie. Mine has never been positive. My lupus was diagnosed by a renal biopsy and symptoms. I have the anticoagulant antibody, had a PE in my left lungs, have had cerebritis/neuro involvement and end stage renal disease. I also have a pacemaker courtesy of Lupus. My c-reactive protein, RF, Sed rate were really high, but I have never had a pos. ANA. Judy

Will your doc do a lupus panel anyway to test for the antibodies? My first ANA test was positive but not a significant titer (so in fact it was considered negative) however they also ran a anti-RO (aka SSA) antibody test which was highly positive. Since that first appt, my ANA has gone positive but it wasn't in the beginning. Who knows, it may be negative again since I'm medicated.

One more thing..the last test I took with my Rhummy had some protein serum which was high..but she would not explain what it meant. She said we will wait until next time we do blood work. :( I am not sure what that is about. I do not have all my blood work in my records. I will admit to being foggy heady, scattered and overwhelmed. ..