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ANA Titer 1:1280 pattern homogeneous and speckled o/w negative work-up
Hello. Desperate for help and don’t know where to turn since Rheumatologist stated they don’t know what is causing my symptoms. November 6,2024 first high positive ANA titer 1:1280 pattern homogeneous and speckled with a repeat test on Nov 14,2024 showing highly elevated ANA titer (1:1280) with a speckled pattern only after repeat, alongside negative results for other specific antibodies like anti-dsDNA, anti-Smith, SM/RNP, SCL-70, negative anti-Ro/SSA, negative anti-La/SSB, normal RF, normal C-Reactive Protein, ESR, Folate, Complement C4, Complement C3, Serum Iron, TIBC with low normal WBC, low normal HGB, low Unsaturated iron binding and a normal urinalysis, normal lip salivary gland biopsy with TMJ pain and dry mouth, globus sensation and a feeling of leakiness or fluid coming from the gums, normal parotid ultrasound, muscle aches, and fatigue. Being referred to tertiary care ENT by Rheumatologist since original diagnosis was glossitis after being referred to an ENT initially from Internist for nasal polyps. ENT on Oct 31st determined no polyps and after one look in my mouth said likely systemic due to large tongue and dryness. Tongue only gets swollen if teeth irritation causing sores due to dryness. I have been struggling since Jun 2024. Rheumatologist was kind enough to prescribe pilocarpine with a 4 week f/u but this is with a diagnosis of glossitis unknown etiology. I will start this today, Dec 6,2024. I have an allergy consult next week. I’m just lost looking for direction as my own advocate through this journey. Any suggestions will be greatly appreciated.
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I was diagnosed with lupus 48 ye4ars ago and I had a positive ANA titer with a speckled pattern. You need to get a second opinion.
@ barbfe - clinically I don't present with lupus symptoms. More dry mouth severe and dry eyes mild to moderate as primary symptoms and fatigue which is so not like me. Don't know what I am going to do yet. A bit frustrated with medicine so trying again to treat self through vitamins
I’m both a patient with 6 autoimmune disorders and a retired/disabled healthcare provider. I have seen this situation many times and experienced it firsthand myself. It took me a decade to get my first diagnosis of lupus with an ANA of only 1:40. I was lucky that wasn’t ignored after 10 years of numerous classic signs and symptoms. I’m going to suggest a few other tests that may be helpful in ruling out some additional causes of fatigue as well as my perspective on your frustrating struggle. Some people with lupus have no other antibodies than ANA initially. It can take months to years for the whole picture to become clear. A good doctor should consider signs and symptoms, not just lab values. Treatment should be offered even if the diagnosis is unclear. In addition to the labs you have had thus far, a few other things to check are anti thyroid antibodies for Hashimotos thyroiditis (can cause hi ANA, fatigue), thyroid hormone levels, Epstein Barr panel for chronic EBV syndrome ( this MUST include an early antigen (EA) level for chronic viral activity.) This virus causes mono and usually goes into remission but stays active in some people causing chronic fatigue and is thought to trigger lupus in some people. Skeletal muscle enzymes (CK, aldolase) should be measured to rule out myositis, muscle inflammation. I would suggest reviewing the symptoms of lupus and check marking any and all you have had such as sun sensitivity, rashes, hair loss, etc. Be sure a urinalysis has been done. There is a more sensitive test called Avise CT that a rheumatologist or even PCP can order that may turn up clues for all the common autoimmune diseases. Then, be sure to have some of these things repeated at 6–12 month intervals since new clues may emerge over time. Clearly something is going on and you will need to be your own researcher, advocate and press for what you need. There are many OTC products that help with dry mouth. I use Spry spray (Amazon). I do hope you find answers and help soon! Your symptoms are valid and you will get help!
@slkanowitz - Hello. Thank you for this information. All the tests you mentioned above except the skeletal muscle enzymes and EBV to include EA have been completed and normal/negative. I will have my internist draw those. Will not bother mentioning to Rheumatologist since was matter of fact that he does not know why I am having what he states are atypical symptoms after ruling out sjogrens, lupus and CTD. He did start me on pilocarpine which I am taking twice daily now and will max at 3 times a day. A small amount of sputum is being produced only. My gums are receding from my dry mouth. I carry around with me all the dry mouth products and use lozenges. Since I have associated TMJ pain xylitol gum is a no for now. I will gather enough strength to advocate for myself again. Just an exhausting couple of months and trying to regroup with a new starting point. I am just so frustrated. Thank you again for the information. Will write in my log for future follow up testing.
https://avisetest.com/patient/ctd/
Tests for 23 biomarkers and looks like it tests for 8 autoimmune disorders. From the site:
Patented CB‑CAPs biomarkers
AVISE Lupus, a component of AVISE CTD, is the only validated test that uses patented biomarkers called CB-CAPs that have been proven to outperform standard diagnosis laboratory testing in the detection of SLE.
CB-CAPs identifies significantly more lupus patients that would otherwise appear negative with conventional markers. CB-CAPs are an innovative way to measure abnormality in your immune system that is unique to lupus.
Using CB-CAPs and other lupus-associated markers, AVISE CTD employs an advanced two-tier algorithm and proprietary Index Value to help turn isolated data points into actionable information. The index result is plotted on a spectrum associated with the likelihood of the presence of lupus.
@windyshores - I saw that test through my research but it requires someone who understands how to read the test. In light of my rheumatologist already determining that I have no AI condition who else can read the results for that test?
Aother poster mentioned the Avise so I just googled it and posted info on it. @trspac I have never had this test. I had an ANA reflex panel which showed high antibodies for scleroderma . That test is done after a positive ANA. I have no idea why noone ever did the panel in the past. I was diagnosed with lupus 20 years ago but don't really meet the criteria in my opinion.
If you were diagnosed with Sjogren's how would your treatment change?
If you were diagnosed with lupus what medication would you accept?
Are you being monitored for internal damage? I really don't care about labels. I care about kidneys, lungs, heart, gut and am being monitored.
Have you had a Lyme test? EBV?
I cannot take any meds at this point. My friend with RA can't either.
Plaquenil is often the first step. Would that help?
I am seeking pain management, PT massage, and seeing a functional medicine doctor who is very accepting but his treatments are expensive. I have done IV glutathione in the past.
@windyshores - I just care about my health. Being that is is obvious I have an immune response causing inflammation it is concerning. Don’t want inflammation sitting around as this can cause further damage. Don’t care about a diagnosis, just want to be treated to resolve the underlying issue if possible. Treatment is the same with sjogrens that I am taking now but don’t want to have to be on pilocarpine forever. I have not had any further testing other than what has already been done to rule out sjogrens, lupus and connective tissue disease. As for monitoring, i am going to leave this up to my internist since rheumatologist has no reason to continue seeing me. I did see an allergist this past week and additional blood work is pending for vasculitis since she observed the angioedema in my mouth. Not sure yet if I will be looking into this further. For now, I will likely try Accupuncture and like you look into functional medicine but it is really costly so have to do my homework. Hope that it is working well for you.
A lot of functional medicine is too expensive for me. @trspac how many rheumatologists have you seen? I hope you can find one who listens!
@windyshores - I've seen one rheumatologist and would prefer not to doctor hop. I will try and treat on my own for now through juicing and vitamins until I can figure out a better direction. Thanks for remaining hopeful on my behalf since frustration has got the best of me for the moment.