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

Posted by bwhitten01 @bwhitten01, 3 days ago

It’s been 19 years and docs still cannot determine what disease is causing this. I have lots of pain in various joints and muscles, plus extreme fatigue. My CRP and SED rate are always high. I’ve been on almost all of the biologics but no help. Currently only on meds for pain; Cymbalta, Gabapentin and Hydrocodone. I just had my yearly AVISE test and awaiting results. Pain has now spread to left hip.
Am I the only one with this? At times it feels the docs don’t believe I’m sick.

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Mentor
John, Volunteer Mentor | @johnbishop | 3 days ago

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?

REPLY
windyshores | @windyshores | 3 days ago

@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.

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meeshodge | @meeshodge | 2 days ago

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.

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1 reply
windyshores | @windyshores | 2 days ago
In reply to @meeshodge "I had high ANA and Sed rate for several years. I went to multiple doctors. Misdiagnosed..." + (show)
@meeshodge

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.

Jump to this post

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.

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slkanowitz | @slkanowitz | 2 days ago

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.

REPLY
1 reply
sharon44r | @sharon44r | 22 hours ago
In reply to @slkanowitz "I’m so glad you posted and are part of this forum. There are many here who..." + (show)
@slkanowitz

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.

Jump to this post

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.

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