What can cause ANA titre of 1:2560?

Hi, @carpe_bean. Glad you posted.

One of our members, @johnbishop, may have some thoughts for you. You might also take a look at the Autoimmune Diseases group at:https://connect.mayoclinic.org/group/autoimmune-diseases/, as well as this discussion: https://connect.mayoclinic.org/discussion/autoimmune-diagnosing-problem-21474a/.

You mentioned experiencing some weird symptoms. Wondering if you might tell us more about those?

Hi @lisalucier,

Thank you for responding. I do hope @johnbishop might have some helpful input. I've been following the Autoimmune Diseases group you mentioned for a few weeks and have read through many of the discussions. Some of the threads have provided useful info during visits with my doctors here. I haven't seen much specifically about what can cause ANAs that are that high though.

Geez, I hadn't intended to go too much into the specifics of the course of my illness simply because of the dizzying array of seemingly unrelated symptoms. Sure-fire way to sound like a loony to a doctor is to list more than 5 symptoms at an appt. But hopefully folks here are more understanding, so here goes!

*Vision problems – dry, tired, burning eyes that often feel gritty, worse in the sun
*Difficulty concentrating and thinking
*Fatigue (not the first symptom, and has improved slowly)
*Difficulty swallowing
*Deep pain in muscles, worst from neck to tailbone and in big muscle of left leg and shoulder
*Adrenaline rushes like the feeling you get when you fall from a plane (Jan – April mostly)
*Back pain around left kidney/adrenal/spleen (constant, horrid burning or sharp pain)
*High blood pressure
*Headaches, usually radiating up from the base of my skull (constant since July)
*Neck pain (constant since July)
*Painful, flaky dry skin rash on right middle finger at knuckle (resolved with prednisilon)
*Insomnia (Jan – April, now resolved)
*Chills and sweats
*Decreased appetite (Jan – April, resolved with prednisilon)
*Weight gain
*Extreme thirst & frequent urination (Jan – April worst, now wake up 1x/night)
*Bloating
*Chest pain
*Super mild intermittent cough, mostly when laying down or in certain yoga positions
*Chronic UTIs, last one took 3 rounds of antibiotics to resolve
*Can't focus, make decisions, trouble comprehending what I've read
*Burning pain in lower back at site of excised lipoma, tail bone, and surrounding area
*Tingling and prickles down left side only
*Wake up and both hands are completely “asleep”, nasty pins and needles when I move them
*Edema? Swollen hands that always hurt and feel stiff

Doctors have ruled out just about everything, really. I asked the rheumatologist today if she thought it could be something like CFS/ME, but her response made it clear she doesn't believe either of those is a “real disease.” My only other guess is that this is a virus, maybe something like chronic EBV. I was tested for it in March and again in May and both times, the IgM level was 2.2, then 2.1, which was about 4x elevated according to the allowable upper limit for the lab result. My GP at the time said since it was just a virus, I just needed to go home and rest. Since then, every doctor I've seen said it isn't EBV because the IgM level from March to May didn't change, which means that's just my baseline.

My husband and I are pretty much at zero here – no idea what to do at this point. If we could use our German insurance to seek medical help in the US, I'd go back in a heartbeat. Or if we could even find a doctor who treated ME or EBV here, I'd try to see them. Unfortunately, the nearest clinic that treats infectious diseases like that is in Berlin, 4 hours away, and I can't even schedule an appt without having seen a long list of specialists and having had a list of tests. My current GP directly refused to order any more tests at my last appt, and he's the third GP I've seen. The first told me I'm in pain because of “fear” and the second attributed my symptoms to “anxiety.” It's exhausting and incredibly stressful trying to get help from doctors who clearly think I don't belong in their office. At what point do you just quit having faith in doctors altogether? At this point I think I might be better off avoiding them altogether and hopefully this nasty thing will eventually just go away on its own.

Hello @carpe_bean, I'm sorry you are not able to get to the bottom of what's causing your health problem. You certainly have been through a lot. I'm not sure why the doctors do not take you seriously when you give them a list of the symptoms you are having. Are you currently taking any specific medications or drugs? and/or have been taking them for a long time?

Also, it might be worthwhile just to run some of your symptoms through the Mayo Clinic Symptom Checker website just to see if it may confirm anything for you. Here is the site if you want to try it: http://www.mayoclinic.org/symptom-checker/select-symptom/itt-20009075

John

I have a few of your symptoms but I'm not sure they are related or have the same cause.

*Wake up and both hands are completely “asleep”, nasty pins and needles when I move them - I have polymyalgia rheumatica (PMR) which my rheumatologist explained is arthritis all over the body. Because I am a side sleeper this happens to me when my PMR is active and I'm not on prednisone or I'm trying to taper off of prednisone which I'm trying to do now. The doctor told me that the inflammation puts pressure on the nerves and that causes the tingling, pins and needles feeling. My PMR was in remission for 6 years but came out of remission last year in August and I was put on 20 mg of prednisone. Now I'm fighting a running battle trying to taper off the prednisone to see if the PMR will go back into remission...may never happen but I'll just have to adjust and it will be my new normal.

*Weight gain - I have had a minor weight gain which I associate with the prednisone. The only way I can stay in control is to stay on top of my diet. Found these words of wisdom in another forum - DIET: Every time you eat or drink, You are either feeding disease
or You are fighting it. The choice is Yours.

*Fatigue - So much to do, so little time - I think this one is on me to change and get more sleep while balancing what I need to get done.

*High blood pressure - have had this since my late 30s (now 74). Have taken several different medications which were changed in my late 40s after participating in a Mayo Clinic heart study and my diagnosis changed to hypertension causing the high blood pressure or something like that. Before that I was on lisonpril which is what I personally think caused my peripheral neuropathy or at least made it worse but it's just my opinion based on my own research into the drugs I have taken. I'm now on spironolactone and hydrachlorathyazide for the high blood pressure.

*vision problems - I'm still working on this one. I'm not sure if it's just a sign of getting older. I do have the start of cataracts according to my last 2 eye appointments which I get every year. I got new glasses several months ago but they don't seem to help much.

It might help if you can prioritize your symptoms to something like major and minor ones for your doctor so that what's really important is addressed by your doctor. I think it's really a good idea what you've done to make a list of all your symptoms and look for a common cause or see if a group of the symptoms point to a specific health issue. If you like to do your own research, I would recommend using Google Scholar (https://scholar.google.com/). Mainly because it will let you sort the results so you see the newest information/links at the top by clicking on the year link at the left of the results.

Hopefully some others will join the discussion with what is working for them.

John

Welcome to Connect @carpe_bean,

I found this study about the predictive value of antinuclear antibodies (ANA), and thought you might wish to read it:
http://www.sciencedirect.com/science/article/pii/S2211283913000178
I'd also encourage you to view this Mayo Clinic page about ANA results: http://www.mayoclinic.org/tests-procedures/ana-test/details/results/rsc-20344732

Fellow Connect members @hchristopher @lisabeans @taterjoy @brie87144 @jewel8888 @steeldove have all experienced the frustration of not getting a clear diagnosis, and I'm certain they will return with more insight.

@carpe_bean, may I ask if any of your family members have autoimmune disease?

@johnbishop

Hi John,

Thank you! I really appreciate your response. As to why the doctors here aren't taking me seriously, I think it's a combination of things. I get a sense that much of it stems from the culture here. I've gotten the clear message that I'm no more important than the next patient - in fact, one doctor blatantly said that. It's just widely known and accepted that wait times for an appt with a specialist or for tests like MRIs are commonly 3-6 months. I've noticed that across the board, doctors don't take a thorough patient medical history, family history, only on rare occasions or if you request it do they take vitals - BP, heart rate, temperature, height, weight, etc, and physical exams are either non-existent or cursory. They just have a completely different approach to medicine.

Prior to January 2016, I wasn't taking any medications, not even vitamins. In April 2017, a doctor rx'ed Tramadol for pain control and I've taken it nearly continuously since then, first with liquid drops (though I was taking 1/4 of the daily amount he rx'ed so it lasted much longer). In June, my GP rx'ed long-lasting Tramadol oral tablets instead to be taken twice a day. I'm currently taking them once in the morning, 50 mg tablets. I honestly am not sure I could function without them, which sucks. Other than that, I'm only taking 20000 units of Dekristol (Vit D) every 2 weeks. My vit D was at about half what it should be back in March, when I started taking it. My levels are now finally back to normal as of this week.

I did check the symptom checker on the Mayo site. I've been on there so many times! It really is a good resource, but unfortunately it doesn't allow searching by lab results. If only I could put in my results for ANas, iron, Complement C3c...those kinds of things. Unless there's a way to do that that I maybe missed?? I'm afraid I really just need a good doctor.

@johnbishop

John, I'm sorry to hear about your PMR. Nerve symptoms are just horrid. It's its own weird beast. Luckily the left-side nerve symptoms that were so bad for me a few months ago have improved, likely also due to prednisone. Some of the symptoms worsened again after I stopped it, but they're manageable. Do you or your doctors know why your PMR came out of remission? And is there no way they can control the inflammatory process except corticosteroids? Have you tried plasmaphoresis, or is that an option?

I wrote down the quote you shared and taped it to my fridge: "Every time you eat or drink, You are either feeding disease
or You are fighting it. The choice is Yours." I like that. It's so hard to say no to my disease when it's screaming for chocolate. Ugh.

You said it perfectly with regards to the fatigue. Even most of the time when I'm awake, I'm not really with it, ya know? I feel like a zombie.

Ok, you lost me on the hypertension causing the high BP. I thought they were the same thing?

I did prioritize my symptoms and usually only share the 5 or 6 worst ones with the doctors. I made the mistake of trying to explain everything at my first couple of appt and I swear their eyes actually glazed over. I've been having memory problems and have been in so much pain at appts, which makes it hard to communicate coherently, I finally started asking my husband to come with me to appts. He's not a medical doctor but has a PhD in science and is insanely logical. It's been really helpful having him there, in part just because he now understands why I've been struggling so much with the doctors. And I will definitely keep on researching any new info from the doctors here on Google Scholar.

I hope your PMR goes back into remission soon!

Carrie

Hi @kanaazpereira and thank you,

I can't believe you shared the Science Direct link above. I JUST read this article a couple of weeks ago. It's fantastic! I had read so many articles about ANAs before I found this, too, and none of them really included specifics about high ANAs. Most articles just casually mention that viruses and bacterial infections can cause "elevated ANAs" without going into more detail. According to the article, it sounds like I'm more likely to end up eventually being diagnosed with an autoimmune disease, simply based on statistics.

As far as I know, only two family members had/have autoimmune diseases. My maternal grandmother died of SLE with complications from nephritis when she was 39, my age. And I have a paternal first cousin with RA. My mom was adopted so I have very little family medical history for her side of the family beyond my grandmother.
Interestingly enough, I just had an appt with a rheumatologist this week and she said she's sure I DON'T have any rheumatic autoimmune diseases. She suspects autoimmune hepatitis strictly based on my ANAs and chronically elevated liver enzymes - GgT, ALT, and AST have been high since I got sick in January. She recommended I see a gastroenterologist. Apparently rheumatologists don't treat all autoimmune diseases? Gastroenterologists are booked out three months here, so I guess for now, it's back to the waiting game. In the meantime, I plan to head over to find a forum for Connect members with autoimmune hepatitis and follow their thread.

Thanks Carrie! (@carpe_bean), I don't think the rheumatologist or any other doctor really knows why PMR goes into remission or comes out of it again. I wished I knew or could find out. That is indeed the $64,000 question. I going to start taking some tumeric powder with my coffee in the morning and with some tea at night to see if it helps at all. I do take a tumeric pill daily but I'm not sure it's helping so far.

I was switched from lisinopril which is an ACE inhibitor to spironolactone which is a diuretic for my blood pressure after the heart study I was in at Mayo years ago determine the high blood pressure was more related to hypertension than whatever they thought it was before (not really sure). I'm guessing thought and I have zero medical knowledge, training or background.

I think that is a great idea to take you husband with you to the appointments. It can really be hard to focus and remember what they are telling you and a second person is always helpful. My wife does come with me on anything major.

John

@johnbishop Hmmm, well I guess it makes sense that they don't know what makes it come out of remission. Seems like there's just so much that isn't known about many of the ADs. So much more than 50 years ago, though, so that's a plus. When I was telling a doctor recently about my grandma dying for kidney complications from lupus when she was just 39, he was pretty taken aback. Here's to living in the age of modern medicine!

I just saw another post on here about turmeric for liver issues. Since I'm not actually sure what's wrong, I've been hesitant to try supplements or medication for fear of making it worse. But I have a couple good links to read up about it and see if there are any contraindications for use. I really don't have any active signs of inflammation, which I think is partially what's confounding doctors, but if it can't hurt, I'm willing to give it a try. Although I cut out coffee awhile ago since it hasn't tasted "right" for months. So SAD! I've always been a coffee fiend.

I'm glad to hear you take your wife to appts. It was so hard for me to ask my husband at first - still is but it's gotten easier. He's doing a post doc so he pretty much lives at work. He'll prioritize me any day over work if I just tell him what I need from him, but it's so easy to fall into the classic "woman expects man to read her man and just do what she wants without having to say it" pattern. 🙂