Author Topic: Question for seronegatives  (Read 383 times)

Deseree

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Question for seronegatives
« on: September 14, 2018, 12:59:06 PM »
Has anyone here taken the Early Sjogren's test? Was it critical in achieving your diagnosis? Did your doctor have a lot of confidence in its accuracy/usefulness? Did anyone still come up negative and/or have your blood tests turned positive since then?

Without going in too much detail, my symptoms started about a month ago with headaches, dry mouth, dry throat, dry nose, and very minor dry eye. Seemingly overnight this happened, and just hasn't improved. I've had all of the typical blood tests (ANA, RF, Sedimentation rate, SSA, SSB) and all has come back negative. All the doctors I've seen have said that I'm probably too young (I'm 30) for this to be likely and that I don't fit the typical presentation of the disease, so it must not be Sjogren's. Now if they are right, that's great, but I still have these symptoms and I want relief. Which got me to researching the medical literature in more depth, where I came across the "Early Sjo" test.

So, I found a doctor who was willing to order the Early Sjogren's test, and we are currently waiting for Immco (the company who makes and performs the test) to mail the test kit.

The research I was able to find looks very promising, stating that the test correctly identifyies 91% of people with the disease and correctly identifyies 83% of people without it. From my understanding, this is pretty good, considering the typical Sjogren's tests only correctly identify 70% with and about 80% without the disease.

I know I sort of asked a similar question in a previous post, but it's been an absolute nightmare trying to find a doctor who has any knowledge of this disease or this test. Thanks again everyone, you have been so helpful!
30 year old female
No diagnosis as of yet. Dry mouth, nose, throat, and eyes. Currently taking ubiquinol.

Judes

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Re: Question for seronegatives
« Reply #1 on: September 14, 2018, 04:07:16 PM »
Hi Deseree I had a similar situation as you, seemed to happen very fast after a severe emotional event. Though looking back I've had symptoms fora long time it just must have been exacerbated by this event. I have not had this early test but am very much interested in it. I can't seem to get my drs to take me too seriously so doubt they would help me get it. I may ask my rheumy next visit though. I wish you luck in your journey.

markt

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Re: Question for seronegatives
« Reply #2 on: September 14, 2018, 04:45:41 PM »
I had this test ordered by my ophthalmologist at disease onset/initial flare.  I was highly positive SP1 and CA6 antibodies; this explained my positive (homogenous) ANA screen that it captured.  It also caught a low C4 compliment level, or hypocomplementia, characteristic of AI inflammatory blood disorders.  Separate testing revealed elevated TPO antibodies and that I am a genetic carrier for HLA-B27... 

So...its a valuable test that pointed me down a path for further testing to paint a picture.  I guarantee you that other Rheums will want to order your tests again through labs they are familiar with and have confidence in.

As far as other testing, Ultrasound of your glands is very valuable (swelling and lesions).  Interpretation is problematic though, as Sjogrens clinics are the best at it.  The lip biopsy is the gold key to diagnosis (its possible to be positive for focal lymphocytic infiltrate/aggregates, and be SS-A,/B negative.  Just means you have other relevant antibodies at play...with more being discovered).

Pretty soon they will develop at commercial test for cathepsin S in you tears... right now their is an Inflamma Dry test for MMP9...associated with AI dry eye (I'd also recommend this to build your case).
« Last Edit: September 14, 2018, 04:49:09 PM by markt »

Intelife

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Re: Question for seronegatives
« Reply #3 on: September 15, 2018, 03:57:20 AM »
My doc sent my blood work to Mayo for the early biomarkers test.  All came back normal although I have been classically symptomatic for five years and had a lot of autoimmune stuff going on most  ofmy life.  So, go figure!
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SjoGirl

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Re: Question for seronegatives
« Reply #4 on: September 15, 2018, 02:17:30 PM »
I have had every test except the early one. I wish I had known about it or that it existed when I first became ill. I had blood markers and symptoms, but my lip biopsy was negative (FYI I have read contradicting evidence about the need to have a positive lip biopsy to have a clear diagnosis).

My then rheumatologist here said I had SjS based on symptoms and blood work, Hopkins said not so, that I had undifferentiated connective tissue disease. However, Hopkins said diagnosis didn't matter because treatment was the same. However, UCTD can resolve over time, and while SJS can go into remission, the former is more likely than the latter.

Further testing and disease activity lead to me now being diagnosed with sero-negative RA, maybe along with SjS, maybe just RA and OA, which I also have.

There seem from my 10 years of experience no easy answers, though maybe the early blood test provides them. Good luck with finding answers.
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.

Carolina

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Re: Question for seronegatives
« Reply #5 on: September 16, 2018, 06:20:12 AM »
Dear Sjogren's Angels,

I understand the desire, need, for a test confirming the underlying cause for all of your misery.

Sometimes that happens early, sometimes that happens very late (my case) and sometimes it never happens.

I have always been seronegative, and always will be because my Immune Disorder isn't caused by autoantibodies.  After many many years I was diagnosed with Primary Immune Deficiency Disorder.  My immune system uses cytokines to attack my organs/systems and I am treated every four weeks with IVIG to bolster my deficient immune system.

So I did get my defining diagnosis, at age 70!

The key is to find a medical professional who will effectively treat your symptoms, regardless of the cause.  I always recommend seeking help at a University Medical Teaching Hospital.   

The good news when you can't find the cause is that in most cases there is no cure for the cause (since it can't even be identified) and that if the cause is indeed Sjogren's, there is no cure, only suppressing the activity of the antibodies with an immune suppressant or perhaps treatment with one of the new biologicals.

The immune suppression is usually Plaquenil or a chemotherapy drug like Methotrexate or Imuran.  I don't know what biologicals are used (Rituximab?)

And if you suspect Sjogren's the best news is that Sjogren's often doesn't progress beyond dry eye/dry mouth.

And for those who do have progression, the progression is usually fairly slow. The dryness can be treated, so get what you need to treat your current symptoms and try to relax and keep breathing!

Regards,  Elaine

Female-76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-IBS-Knee/Shoulder Degeneration-SIBO, Intertrigo,Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-FishOil

Sooki

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Re: Question for seronegatives
« Reply #6 on: September 16, 2018, 09:59:54 AM »
I'm seronegative on everything, but I haven't had the Early test.  My lip biopsy was positive and that, with the symptoms, was sufficient.  I've heard that lip biopsies can give false negatives (maybe depending on the actual sample spot?) so it might be worth it to repeat a negative biopsy.
68 yo, Sjogren's, Lupus, Hashimoto's, fatigue, MGUS, peripheral neuropathy, ocular rosacea
Plaquenil, CellCept, Synthroid, Atorvastatin, Xiidra, doxycycline, D3, biotin, B12, ALA, DHEA, Ubiquinol, CPAP, D-mannose, Paleo AIP, fish oil, Cliradex wipes

Deseree

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Re: Question for seronegatives
« Reply #7 on: September 17, 2018, 01:23:58 PM »
Thank you everyone for your responses. I'm trying not to let the anxiety of waiting for this test get to me, but it's hard to do. I hope this test holds some answers for me. I've always been really sensitive to changes in my body/health so there's a part of me that wonders if it's still too early to figure out what's wrong with me. Or, if I truly don't have Sjogren's, as my doc keeps implying, what could this be? As far as I have found, it looks like there's nothing else this could be blamed on. Anyway, thanks for being so helpful everyone, it is nice to know there are others out there going through this too.
30 year old female
No diagnosis as of yet. Dry mouth, nose, throat, and eyes. Currently taking ubiquinol.

trejonina

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Re: Question for seronegatives
« Reply #8 on: September 17, 2018, 07:39:49 PM »
Hi, In my late fifties (yrs old) the tests came out negative first, then  couple of years later, positive: ANA,SSa and SSb. When I was 42, my eyes were really dry, and I had severe fatigue, joint,  severe back and muscle pains.But at 42, didn't have tests, because until an opthalmologist in my fifties told me jokingly "could you have the collagen disease"'??  (didn't mention Sjongrens.)  So I looked it up and and practically fought with rheumy so he could order the tests. So the diagnosis practically came from my investigating SJ, and asking rheumy to repeat tests.This year, Anti DNA and Hashimoto's came out positive. It was my idea to have them done too. So maybe symptoms are a giveaway. Like in endocrinology, even if TSH comes out normal, some endos will treat the symptoms and give the patient levothyroxine !!! That happened to me too, TSH normal, and I dr endocrinologist was about to dismiss me , then on second thought he felt thyroid nodules which I had, had a biopsy which came out negative. There's also seronegative RA, so don't let down your guard!!

SjoGirl

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Re: Question for seronegatives
« Reply #9 on: September 19, 2018, 11:21:43 AM »
Just to add to the conversation, I was told when I visited the SjS center at Hopkins that it can take up to seven years for a diseased like SjS to fully manifest. So, I suspect as others have noted, having symptoms might be the first sign.
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.