Hi everyone,
I got really sick back in January and have been struggling to get a diagnosis or treatment. I’ve read quite a few chat threads on this site for some time but have never posted. I have a question no doctor has been able to answer. Maybe someone in this community might have some insight! In May a doctor tested my anti-nuclear antibodies (ANAs). The titre was 1:2560. I know ANAs can be elevated by autoimmune diseases, cancer, and viral/bacterial infections, among other things. So far, doctors haven’t been able to figure out what’s wrong, despite a host of weird symptoms and irregular tests. My question is: How likely is such a high ANA to be associated with an autoimmune disease? I’ve repeatedly read that the titres caused by viruses and bacterial infections are usually “mild”, presumably <640. Is that true? Doctors have ruled out cancer, they don’t believe it’s a bacterial infection, but a virus is always a possibility. Can chronic viruses like Epstein-Barr cause such a high ANA? Has anyone else here personally experienced that? I’ve seen a handful of doctors, but most have been dismissive and unhelpful. I’m really frustrated. Hopefully someone here can provide some clarification. Thanks!
I went to see my rheumatologist last month and he's the greatest. He did the routine blood work for my 6month visit. And they called me the next day and said your AHA is higher then before. And the thing is l am very allergic to a lot of meds. So he was going to prescribe me a medicine to suppress my the nerve but l told him he gave it to me before and l.had a reaction. He said what kind l said it had me to use my EpiPen so l didn't get it. And seems like there are many meds for high ANA. So l have to just deal with my problems. I don't know what happens if you can deal with the symptoms. Has anyone had this problem. And l don't know if l can't take some meds because of my liver. Anyone who can enlighten me about this it will be helpful. Thank you
Hi @techi you may have noticed I moved your post to this existing discussion on high ANA so you can connect with others who also have high ANA. Just click VIEW & REPLY in your email notification to get to your post.
I wanted to introduce you to @hchristopher @lisabeans @taterjoy @brie87144 @jewel8888 @steeldove and @carpe_bean as they have experience with this.
What medication was your doctor going to prescribe?
REPLYHi, carpe-bean, although I am primarily a lung and heart patient, a High Resolution CT Scan recently revealed a lot of scarring in my lungs. I was diagnosed with Interstitial Lung Disease (ILD's). My Pulmonologist sent me to a specialist who deals with "rare and unusual I.L.D.'s and lung transplants." He diagnosed me in less than 15 minutes. He looked at the Hi Res CT Scan, asked me a few questions (dry eyes, check, dry mouth, check. Mom had the same but was undiagnosed), looked at my finger tips, which look and feel like little leprechauns have been using razor blades on them, painful and cracked. My diagnosis: Sjogren's Syndrome. (pronounced SHOW-grins). I started taking generic Cellcept, which is supposed to help reduce the inflammation in my system.
Our similar symptoms: vision problems – dry, tired, burning eyes that often feel gritty, worse in the sun, difficulty concentrating and thinking, fatigue, deep pain in muscles, tingling and prickly, worse on left side of body, neck pain, extreme thirst. You may want to go here on the Mayo site and read more about Sjogren's, and see if that's what you might think you might have. I have bought Bausch + Lomb eye drops without preservatives, and still drink tons of water every day, now I know why I've been so thirsty for so long. I understand how frustrating it is to put trust in doctors.
I started going down hill in Sept, been on 40 mg Predisone/day, attempted tapering twice. My Pulm. had me get a regular CT Scan. I went to the appt, he sat there, crossed his arms and legs, and said, "I don't know what's wrong with you." Great. So just keep taking Prednisone until symptoms subside. Well, they never subsided, just got worse. If I climbed a flight of stairs, I was gasping for air like a fish out of water. I emailed my Pulm frequently, telling him how miserable I was. I'm a strong person and have been through a lot, but this "I don't know" business is for the birds. He should have sent me off for testing much sooner. OK, I'll stop my rant. Let us know what you think about Sjogren's. Try to stay strong! Suzi p.s. if you have any of your blood work results, perhaps online with your health care system, you could look for SSA and SSB Antibody counts. SSA and SSB are 2 indicators for Sjogren's. My SSA is negative, but my SSB is a weak positive, 33 units, 20 units being the high end. My ANA Screen is positive, and my ANA Titular ratio is 1:160. Hope this helps!
Liked by carpe_bean
Examples of rheumatic diseases that might have a positive ANA test include:
1. Rheumatoid Arthritis.
2. Sjogren's Syndrome.
3.Systemic Sclerosis (Scleroderma)
4. Inflammatory Myositis (Polymyositis or Dermatomyositis)
5.Mixed Connective Tissue Disease (MCTD)
6. Overlap of undifferentiated Connective Tissue Diseases.
Hi @devesh, Welcome to Connect. Thank you for sharing these examples. May I ask if you have one of the autoimmune diseases and what treatments you have found helped you?
Liked by Becky, Volunteer Mentor
Hi, I didn't see your post until now. I can't believe how many of your symptoms I've had, right down to the left-side numbness and tingling. So miserable. I'm really sorry you've experienced all this same crap.
I did consider Lyme disease back when I first got sick. I've been bitten by a handful of ticks since moving to Europe, and we live where Lyme is common. Despite that, none of the doctors here even suggested it as AA possible cause of my symptoms. I had to ask an internal specialist to test for it. The test was negative. Another doctor again tested for it, as well as several other tick-bourne disease, and all tests were negative.
At this point (nearly 3 years of being sick), I'm convinced it's a chronic bacterial infection. It's likely something infectious (my hunch and doctors' opinions), and I feel SO much better after antibiotics. Then the symptoms come back. Doctors here say it's absolutely impossible for a bacterial infection to cause elevated ANAs. Agh! So not true.
How were you, treated for Lyme? I assume you took antibiotics? I'd love to know how you're doing now, if you happen to see this post.
Liked by Becky, Volunteer Mentor
@carpe_bean Welcome to connect we are a group of caring people who have diff. problems we can help with I did have a high ANAtiter . I don't remember the number it was 50 years ago but I had the red rash with it and my Dr. then diagnosed it as Infectious Mono caused by the Epstein Barr virus . NOw I have fibromyalgia whether it is related I'm not sure . My Dr doesn't know . It was diagnosed by blood work and the rash,fatigue ,sore throat and fever . The Dr. put me on massive doses of vitamins and bedrest for 3 weeks. My Mom took care of me then. This was my experience with high ANA titer . Good luck Make sure you are under a Dr,s care .
Liked by John, Volunteer Mentor
Hi everyone. I wanted to come back and update you all since you were so kind and helpful before. I have seen a couple different rheumatologists and rare disease specialists. I haven't made it to mayo yet, the trip expensive is a bit big atm unfortunately. That said: two of my doctors have two different theories; fortunately the treatment is the same! My rare disease specialist believes I have seronegative Antiphospholipid Syndrome, due to my frequent livedo reticularis and other APS indicative symptoms. My rheumatologist believes I have seronegative Sjogrens Syndrome and some kind of seronegative MCTD. Either way, I have been treated with 200mg then 300mg Plaquenil for the last 5 months or so. Within weeks my bursitis and tendonitis was half of what it was, and my joint pain was significantly reduced. Now, several months out, I have about half the joint pain I had before, and only very mild tendonitis and bursitis, though it persists in my ankles, shoulders, hips, and wrists. I am going to be getting a central line soon so that I can receive more regular infusions for my POTS, which makes a huge difference in my wellbeing, and I recently had sinus surgery which has helped my breathing and infections a ton! They also diagnosed me with Common Variable Immunodeficiency as my IgG was very low, which explains the frequent infections. I definitely still struggle with a variety of things, neck and right upper quadrant pain have been the biggest issues for the last year or so. I may need hip reconstruction shortly as my right hip, we've found on MRI, has some structural abnormalities, tendonitis and bursitis, a tear in my labrum, and a tear in my gluteus maximus. But overall I am doing much better and am very fortunate to have found physicians who treat my symptoms, not my bloodwork, and listen to my concerns. Thank you all again!
REPLYHow wonderful that you found doctors who listened to you and were able to put the pieces of the puzzle together in order to reach a diagnosis, @zebraclaire97. It must be gratifying to be feeling better and to have doctors who will listen to your concerns.
Advocating for yourself and continuing to seek answers to hard-to-diagnose disorders is very important. You have shown that being proactive and persistent has paid big dividends in your well-being!
REPLYA recent blood test shows I have an ANA of 1.1280. I’m a 75-year-old woman in otherwise excellent health. I do have an appointment with a rheumatologist and likely will have further testing. I’ve read where high ANA is prevalent in older women. Anyone out there find that to be true and diagnosed as such? Thanks so much for any input!
@djanthony
Find a doctor who will order a "double-stranded anti-DNA autobodies" blood test which is the only truly definitive way to find out if you suffer from Systemic Lupus Erythematosis, or "SLE" or even "Lupus" for short. I too had extremely high titres to both Epstein Barr and ANA. Doctors couldn't diagnose me for six full years. Most doctors don't know about the above mentioned blood test or are hesitant to order it because it's very expensive. So I decided to find out for myself what I had because I knew that something had to be causing my horrific fatigue and aching joints. I went to Emory's Medical Library many times to try to diagnose myself until I found that I must have Lupus after all. My primary Doctor told me I couldn't have Lupus because "I didn't have the right personality for Lupus"! I found an excellent Rheumatologist who examined me and told me he believed I had Lupus and also it's sister disease, Sjögren's Syndrome, for which he also ordered an "SS-A and SS-B titres"for the Sjogren's Syndrome. I had both.
Lupus is a very difficult disease to diagnose because each patient has different symptoms, with profound fatigue as the only Universal symptom, I believe. Sensitivity to sunlight may be another common one but is not true for every person. After being in sunlight, the telltale butterfly, or "discoid" rash can appear on one's face. The rash actually resembles a butterfly and you can GOOGLE photos of it. I wish you good luck in finding an answer. If none of your doctors has done the Double-stranded anti-DNA antibodies test, then by all means, find one who will!!! I wish you the best and pls keep us informed. One last thought:. I went to a different Rhematologist first. He told me I was suffering from Epstein Barr and definitely NOT Lupus. After I found a GOOD Rhematologist, I was sure to send the previous Rhematologist the results of my "positive for SLE and Sjögren's Syndrome" blood test results. He later apologized to me.
Liked by Teresa, Volunteer Mentor