Lupus, Sjogrens or something else?

[Nasty_Tony]

Last December my blood test showed positive ANA titre 1:1000 with dsDNA and histone antibodies which are typical for Lupus. I went to see rheumatologist who said that my symptoms (sinus problems for years etc.) would match to Sjogrens but he still wanted to double check results few months later. Last week I went to blood tests and now ANAs are 320 (should be <320) and only histone antibodies present. Pattern was cytoplasmic. I’ll see my rheumatologist in two weeks, but I would like to hear if anyone have similar results? Or what these results could indicate?

[Bebe76]

ANA and specific auto-antibodies can fluctuate over time. Lupus is usually diagnosed based on a combination of blood work and physical symptoms. They may want to keep monitoring your bloods and symptoms if they're unsure.

[Hidden]

Hi. I have seronegative Sjögren’s and seropositve systemic Scleroderma. My antibody for the latter only showed up last year but my ANA pattern has pointed to systemic sclerosis for years now.

What I’ve noticed from the various communities I’ve followed is that once ANA is positive and stays positive - the titre is irrelevant as a marker of active disease so I would not get preoccupied by titres at all as these can come down over time but if clear positive - as 1:320 still is, then basically it’s very likely to mean you have a systemic autoimmune disease.

I think perhaps your pattern points mostly to autoimmune liver disease? - which I believe is more often associated with Sjögren’s. But once connective disease disease is confirmed the name we are given for it is less relevant than the treatment.

Many of the conventional disease modifying drugs are quite harsh on the liver. So it may be worth looking for an AILD community or a large Sjögren’s group (SMART forums has a very good, active Sjögren’s community) to learn more from others with same.

Best of luck 😊

[Jmiller623]

Hi NT! As other responses have indicated, ANA can fluctuate. Anything higher then 1:80 is positive. Some may use 1:160 as a cut off. And 1:40 is borderline and some would say this is negative. ANA level does not correlate with disease so once positive, reordering it doesn’t provide any more information.

Histone antibodies are usually correlated with drug induced lupus. Symptoms disappear after cessation of offending agent. Resolution of symptoms/antibodies can take weeks to months to even a year or two. It is odd that you have cytoplasmic staining. That is perplexing because histones are contained in the nucleus. So that’s something your physician should look into. Maybe order more antibody tests to make sure they are covering everything including extra-nuclear antibodies like ribosomes.

Are you taking or have you take any medications listed below:

Hydralazine

Isoniazid

Minocycline

Penicillamine

Procainamide

Quinidine

Other offending agents generally speaking also include (but not as linked as ones listed above):

Antibiotics

Anti-seizure medications

Anti-tumor necrosis factor (anti-TNF) agents

Interferon-alpha

Blood pressure medications

Methyldopa

Thyroid medications

As I am not your physician, I’d raise these concerns and questions with your provider. There seems to be some more digging that may be warranted. Lupus is a diagnosis made based on lab and clinical criteria. Your provider can go over this with you. Ask questions and don’t be shy. Physicians are not omniscient (although we’d like to think so 😉).

Hope this helps. Sending hugs. Hang in there. Keep us in the loop. ❤️xx

[Nasty_Tony in reply to Jmiller623]

I wrote a long reply but it seems to be gone Basically the only drugs that I have used are:

-several short antibiotics courses to my sinus issues. Usually Amoxillin 1-4/year. Last one November 2020.

-topical minoxidil for hair loss 2 years 2017-2018

-asthma corticosteroid inhaler since 2019

-topical nasal corticosteroids drops daily to sinus congestion. If I stop these there is flu like symptoms within few days.

-antihistamines summer

BUT here is the thing:Jan to May 2020 I was on sublingual immunotherapy for hay allergy. When immunotherapy started my throat and nasopharynx was red an irritated, even if I took antihistamine daily. After 1 month allergy therapy I had horrible flu and sinusitis which was cleared by antibiotics and corticosteroid tablets.

Then after few months my right side salivary gland under tongue started to swell. My whole face was prickling and couple times I felt electric shocks on left side trigeminal face nerve. Antibiotics fixed most of problems and during course I quit allergy therapy.

Atm I have on/off slight burning feeling on right side face(mouth, cheek etc.), some IBS like symptoms, chronic pelvic pain. My eyes, sinuses and mouth feels more dry than they were before. Sometimes I sneeze a tiny bloody snot, yuck. My mouth was some point quite red and irritated, like little veins on oral mucous were more visible. Now it is a bit better. Post nasal drip is worse than ever because dryness. I also have two movable nodules on mouth floor under tongue, near lower front teeth. 3 dentists, 1 oral surgeon and 3 ENTs have looked those nodules. Best guess is they are damaged minor salivary glands.

I have had couple visible lymph nodes on my neck at least 5 years, during allergy therapy I had more lymph nodes visible, still under 1 cm. Some of them shrink a bit after stopping allergy theraphy but docs still ultrasounded them and my thyroid, but nothing special.

I have suspected Sjogrens for years but GPs usually have just laughed whole idea of any autoimmune disease. Even if my mom has hypothyroidism and same sinus swelling issues and my dad has ulcerative colitis. My mom also has Dupytrens contracture. Because my parents have autoimmune and connective tissue diseases that could increase my risk to develop it.

Finally my neuro put me to ANA test and after that to rheumatologist. Rheumatologist suspected that allergy therapy might have triggered some temporary autoimmune reaction on my system. Or maybe flared some mild existing condition to completly next level.

I tried to Google if there is any studies about allergy immunotherapies to cause autoimmune diseases but could not find anything. Only some doubts there is, mostly related vasculitis and some case of lupus.

[Jmiller623 in reply to Nasty_Tony]

Aaaaaw NT. The immunotherapy could’ve pushed things over the edge. I agree. Sometimes there is no rhyme or reason for this stuff when it happens. Histone antibodies are just typically linked to drug induced lupus so it’s interesting that it’s positive. Do you remember what the name of the drug was?

It does sound like you are having a lot of Sjogren type manifestations. Interestingly, I have a similar family history. My mother has Crohns and my father has type 1 diabetes (autoimmune) and also bad Dupytrens contractures. He’s had a release done on both hands. His father also had Hashimotos and his mother had SLE. It definitely runs in families IMO. Some members are affected worse than others and I find men get it milder SLE compared to women. He has signs of SLE but will never get checked.

I too have bad nasal congestion. I do a daily warm saline nasal rinse, take allegra twice a day along with Astelin, Flonase and montelukast. I use an inhaler as needed for reactive airway disease. I also have horrible dry skin with eczema and get pretty big lymph nodes esp on my neck and chin. In addition to a lot of cranial nerve problems, I am treated with IVIG and this has shrunk my nodes and helped with neuropathies esp of the face. You sound mighty similar to me. I was diagnosed with SLE after getting horrid bacterial pneumonia. Things were never the same after. So I wonder if sinus infections are doing the same to you as well. I have also been transiently hyperthyroid but am now back to normal. I did have a salivary gland biopsy and it was negative. But I also had very few/a paucity of glands according to the path report.

Sounds like something is brewing in your case. It took almost 3 years for my symptoms to get to a point that I was diagnosed with lupus. I think I’ve had it my whole life but it was always mild. When I was in your shoes, I was told I likely have evolving lupus. I’d get a second rheumatology opinion in your case if you can. I feel like you have multiple things going on that need to be parsed out. ❤️xx

[Nasty_Tony in reply to Jmiller623]

The drug I used with sublingual immunotherapy was called Grazax (aka Grastek). Next week I’m going to discuss with my rheumatology what are the next steps now.

[Jmiller623 in reply to Nasty_Tony]

Oh man. I was thinking monoclonal antibody when you said immunotherapy. They basically gave you low dose grass pollen extract to desensitize you to pollen. Seems like it backfired. Side effects of any allergy desensitizing antigen are that of an extreme allergy but not necessarily an anaphylactic reaction. I’d also ask about mast cell activation syndrome (MCAS) as well at your rheum appt. Might be worth also asking whoever started you on Grastek about MCAS since immunologists usually manage this.

I do hope you find answers. Please keep us up to date. I’d like to hear what your providers have to say. ❤️xx

[Nasty_Tony in reply to Jmiller623]

My rheumatologist now checked my latest lab results and his opinion is there is no need to do anything. He said that low titre (320), ena profile (antihistones) and my mild symptoms which fluctuate even day to day are not pointing to any spesific autoimmune disease.

He even did Schirmer’s test which result was normal, so it does not indicate Sjogrens.

Basically he adviced me to contact again if situation gets worse. So maybe I just wait and see how things are going🤷‍♂️

[Jmiller623 in reply to Nasty_Tony]

I’d probably wait it out since I’d guess that the Grastek really may have set you off and you have to wait for these effects to wear off. I’m not sure that would take a year though. Something still feels off about your whole picture. I still think MCAS should be considered. I don’t know if another rheumatologist would think differently but if it really bothers you, it might be worth trying?

[Nasty_Tony in reply to Jmiller623]

Yeah, I think this story will continue in the future, one way or another. Before these antibodies were tested my ENT wanted me to consider if allergy shots would work better than those darn sublingual pills. So I have appointment with immunologist after summer.

MCAS symptoms sounds familiar so MCAS or some histamine intolerance would explain why antihistamines sometimes relief symptoms, like sore throat and congestion, after eating certain foods. I also have tried Montelukast but for me it caused sleeping problems and sore throat after few days usage. Maybe I could try it again. But do you know is there any tests for MCAS?

[Jmiller623 in reply to Nasty_Tony]

MCAS is notoriously hard to diagnose. Part because not many know how to diagnose it and immunologists usually do but are a rarer specialty and hard to find a good one. It can be associated with autoimmune disorders as well which we call secondary MCAS.

Best way to diagnose is through IgE and tryptase levels but this rarely happens because tryptase needs to be collected right during or after a flushing/allergy episode. If your tryptase level is elevated, it makes the diagnosis. However, most see how well you respond to antihistamines and if well, a diagnosis of MCAS is highly suspicious. A lot of my nausea, congestion and flushing improved after starting Allegra so I feel I have an MCAS component to my lupus but it has never been formally diagnosed. I also have persistent aPL and Dysautonomia, both which are associated with MCAS.

Montelukast actually made me flush worse in the beginning but after about 2-3 weeks, I had no issue and felt it did help me. If I miss a dose now, I know it. Rice is my biggest enemy. I do fine with gluten. 🤷‍♀️

I’d ask your immunologist if MCAS is a possibility esp if you still have symptoms at your next appt. I think having problems a year after the proposed irritant is gone would warrant further investigation or treatment for an autoimmune disorder?

[Nasty_Tony in reply to Jmiller623]

Update to my case: during last summer after covid vaccine I got horrible nausea especially after eating. I also woked up with racing heart, rumbling stomach and fainting feeling. Went to gastroenterologist who thought I might have gastritis or even bleeding ulcers caused by allergy theraphy (rare but known side effects). Luckily PPIs helped for acute symptoms and during that I noticed that I burp a lot. After summer I had stomach endoscopy and colonscopy, because of stomach issues. My dad has ulceratice colitis and UC can be triggered by my allergy theraphy (also rare but known side effect). So gastro just wanted to check even if my symptoms are too mild for UC.

Upper endoscopy showed just few red streaks in stomach lining and bit irritation. Biopsies clear no celiac, no bleeding just loose lower esophageal sphincter as expected (my whole family has GERD).

Colonoscopy showed quite similar findings. Some irritated areas, but nothing bigger Biopsies showed no IBD related inflammation. Only findings were few Peyer’s patches which were bit hypertrophy and hemorrage colon lining without actual bleeding.

Gastro thought Peyer’s patches are usually related to allergic reactions to foods. So next January I’m going to allergic tests, if there is food allergy triggered by my failed pollen allergy immunotheraphy. Peyers patches may also be early signs of IBD, my dad first had cross allergy to birch and then years later he got IBD.

[Jmiller623 in reply to Nasty_Tony]

I’m not a fan of the leaky gut syndrome theory but that’s how they describe it. They say Peyers patches get inflamed and cause capillary dilation and leaky gut. The theory is bad stuff from your gut can leak out. I’m not sure I 100% buy this but I can say I’ve had GI issues with all of this hullabaloo. My GI attributes it to dysautonomia. My mom has Crohns and I’ve had bloody bowel movements but we are thinking this may be due to endometriosis. Will find out in a few weeks. My colonoscopy showed 2 polyps. Nothing to write home about.

Glad you’re going to see an allergist! Hopefully they can shed light on your issues.

[Nasty_Tony in reply to Jmiller623]

Now I had my allergy tests done but no food allergies found. They tested over 80 foods, pollens, grains, latex, dust mites, few animals etc but only timothy was clear positive, mugwort and dog were mild positive.

Now they are going to do some blood tests for wheat to double check celiac even if my gastroscopy biopsies were negative for celiac. I have been gluten free diet for years with few exceptions which always cause weird symptoms, like diarrhea and mouth ulcers.

I got my covid booster (Moderna, previous shots Pfizer) few days ago and now I have 15-20 heart palpitations episodes daily. My GP did electrocardiogram which was normal. He said because palpitations occures suddenly and mostly when I’m resting it is not so alarming and beta blockers should help.

My heart beat goes 20 beats up for 5-30 seconds then back to normal. If I cough few times it always goes down immediatly. GP though it is also vagus nerve related because pulsating feels mostly back of throat not so much on chest. He said there has been similar cases especially with Moderna booster.

I have had few palpitation episodes before any vaccine and first Pfizer caused 2 bigger episodes and panic attack but nothing like this after Moderna when palpitations are constant.

[Nasty_Tony]

I double checked my last week results there was mention that nRNP/Sm, Sm, SS-A, Ro-52, SS-B, Scl-70, PM-Scl, Jo-1, centromere, PCNA, dsDNA, nucleosome, ribosomal P-protein, AMA M2, DFS70 were all negative.

Here en.m.wikipedia.org/wiki/Ext... is mentioned :

”73% of celiac disease subjects tested positive for anti-histone and was the most prevalent, which is typically associated with Drug-induced lupus erythematosus. This implicates a high probability of an autoimmune disorder in patients with wheat-related disorders.”

I dont use any gluten products because I have issues with them. Year ago during my allergy immunetherapy I had severe stomach problems when I ate few wheat cookies. Month after that my GP sent me to tissue transglutaminase antibody test for celiac disease but that was negative. Of course I have not eaten gluten for couple years before those miserable cookies and celiac blood test requires 6 months gluten filled diet, so the results are so-so. Later they made skin test to grains but all negative.

[AngelicAngel]

Hi Tony. I have Sjogrens. High ana titers. Positive SS Ro A SS La B. Rheumatoid factor >200. Fluctuating ESR. I have non celiac gluten sensitivity & a colleague has Sjogrens & celiac. Both of us grass pollen allergic. Anecdotal link? Was offered hydroxychloraquine but declined for now. Ive cut out wheat/gluten. Take borage oil, high strength vit D, blackcurrant seed oil, eat prunes & omega 3 fish No caffeine. Last year I was immobilized. Now almost back to how I was. Venus Williams has it & she's got it controlled as best she can. Good luck.