Since 2005 my ANA titre is 1:5147; docs can’t find which disease

Hello @bwhitten01, I see that you joined in April of this year and this is your first post so I would like to welcome you to Connect. 19 years is certainly a long time to deal with the pain and other symptoms and still not know the cause. While you wait for other members with similar experience to respond, here are a couple of discussions that might be helpful to scan through to learn what others have shared:

- Positive ANA: What might be the cause?: https://connect.mayoclinic.org/discussion/positive-ana/
- What can cause ANA titre of 1:2560?: https://connect.mayoclinic.org/discussion/what-can-cause-ana-titre-of-12560/

I know you mentioned seeing a lot of doctors. Were any of the doctors rheumatologists?

@bwhitten01, sorry about your frustration. I have had an ANA that high myself but not for a long time. In my experience your CRP and sed rate may be even more significant indicating inflammation, as you know.

Does a diagnostic label change your treatment? That is another question. You said biologics don't help. Have you been put on Plaquenil, steroids or methotrexate (I ask from personal experience and am not suggesting anything)?

It seems rheumatologists mainly monitor for internal damage to kidneys, brain, heart, lungs, blood vessels etc. We get sent to PT and pain management for the pain. Are the meds for pain helping you?

I just wanted to comment sympathetically and don't have answers. It seems so many are dealing with ambiguous autoimmune disorders. I hope your doctors are confirming that you do have an autoimmune disorder (It seems like it!) and supporting you while diagnosis is pending for so long.

I had high ANA and Sed rate for several years. I went to multiple doctors. Misdiagnosed multiple times. Prescribed multiple drugs (which I refused to take). Anyway, I was finally diagnosed with Celiac Disease. I went gluten free and for the first time in MANY years, my Sed Rate and ANA were normal. You obviously have alot of inflammation. Look into the Autoimmune Protocol Elimination Diet. I also did this for 93 days (You need to do this a minimum of 30 days). I found out what other foods were causing me issues.

Good point @meeshodge. My daughter and I both did an elimination diet 20 years ago and gradually reintroduced on food at a time. If we reacted we gave that food up. My daughter has celiac. I have a diagnosis of lupus and had paresthesias (numb tingling) from inflammation and giving up gluten and dairy made a big difference for me. My CRP went down too.

I’m so glad you posted and are part of this forum. There are many here who have endured this frustration of longstanding illness without a diagnosis. I am one. I can give you some perspective that I hope will help. With your ANA that high, I would look at all the symptoms and signs that go with lupus and see how many you have had in succession, not necessarily all at once. I would review all your abnormal lab results to be included. Look specifically at RA, CCP , DS DNA , RNP, SSA, SSB, SCL
Your Avise test will show all of these plus others. These give important clues.
Many Drs expect textbook cases and that rarely happens in autoimmune diseases. It’s also possible to have more than one. One is usually predominant, others secondary.
Treatment is often similar but psychologically I know it helps to have a name for what the monster is. A diagnosis can be a relief and make treatment more specific. Prior to diagnosis, many call it their autoimmune disease. It’s ok to ask your doctor to take his/her best guess. No harm done. As long as Dr is willing to believe you, treat you, help you. If not, find another. I too am one that seems unresponsive to most medication except prednisone, methotrexate and Placquenil. I had to stop placquenil 3 years ago.
Be a researcher, advocate for yourself, ask for what you need assertively. Don’t just accept suffering as the status quo. You may not feel great but I believe you can feel better. We support you! Keep us posted please.

Ana’s also show autoimmune diseases you already have. It’s very hard for doctors to really diagnose some auto immune diseases. They say I have sero- negative arthritis, but I know I have PMR. They say that when they don’t know. RA blood test were negative And some people have abnormal Ana’s with nothing wrong with them. Check all antiflamtorys in blood test. Mine Ana’s looked like lupus, but it’s not.

I am also struggling with a very similar situation. Rheumatologist diagnosed Psoriatic arthritis a couple years ago but none of the DMARDs seemed to have any effect. Trialed a couple biologics but ended up hospitalized with an atypical pneumonia. So I went off all meds and now working with another doctor. I’m fearful of some of the meds (there seem to be quite a few which target multiple inflammatory conditions). At this point, I feel like a guinea pig and helpless. I have painful and visible joint damage (hands and feet) as well as having had knee and back surgery. My medical chart says I have inflammatory polyarthritis. Hoping to find something (other than Tramadol) that will help me.

I have been on all you have asked about. The only thing I have taken that has helped was sulfasalazine. However, I quickly became allergic to the sulfa in the drug. It seems I have been sick for so long and people have stopped believing I’m really sick. Even my family at times.
Now I have a new symptom. My entire mouth feels raw and sore. 🙁

All of my doctors have been rheumys.

@bwhitten01 mouth sores on the roof of the mouth are a sign of lupus. Also I believe that people with lupus tend to be allergic to sulfa drugs. Ask your rheumy!