Author Topic: Can you test positive for SS-A and not have Sjogren's?  (Read 2072 times)

CarpeDiem

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Can you test positive for SS-A and not have Sjogren's?
« on: September 14, 2015, 09:52:19 AM »
I was curious if it is possible to test positive for the antigen SS-A and not have Sjogren's. I know that you can test negative and have it but is it possible to test positive and not have it?

So, To back it up a little. I had been feeling for quite a while that something is wrong. I do have follicullar lymphoma and they said that my fatigue and various complaints (joint pain, headaches, cold hands, etc) are not from my lymphoma. I am stable and have no changes or further progression of the cancer. So I was sent for a bunch of bloodwork and one of the things that came back was positive test for Sjogren's. I went to a local Rhuematologist and she said she does not think I have it. I do not have the classic symptoms of dry eyes and mouth. I agree I do not really have any issues with that, but she also said something that struck me as not being true. She told me it is rare for men to have Sjogren's. From all I have read it is more common for women to have it but not rear for men to have it.

I asked if it was possible that I had a false positive to which she replied yes. i asked then why don't you test again. She responded that it will most likely come back positive again. I was then a little baffled. So many people are negative for years but have it, which makes this so hard to diagnose, but you can test positive and not have it at all. Does anyone care to comment on this?

I had made an appointment at UPenn's Sjogren center back when i first found out I tested positive but thought since the appointment date is not until the end of October let me see someone local. i am thinking i may still keep my appointment at UPenn. Any thoughts?

Just for the record, i am not looking "to have" Sjogren's,and it would be great to find out I don't. I just want to find out why I am not feeling well. I just felt taht the Dr. i saw was not as knowledgable in the disease besides the fact that she said she treats a couple of patients with it.

Carolina

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Re: Can you test positive for SS-A and not have Sjogren's?
« Reply #1 on: September 14, 2015, 10:31:16 AM »
Many people begin Sjogren's with neurological symptoms CD.  Others have fatigue, myalgia and joint pain.

Of course you can have Sjogren's without initial dryness, or perhaps without dryness at all.

A major study done in Japan found a large percentage of patients with neurological problems (peripheral neuropathy) had Sjogren's and didn't even know it

If you test positive my guess is you have it.  What are the various factors tested and those results?  There are folks here who are experts in interpreting results.  I am not.

You Rheumatologist may be suspicious of the test results because the tests aren't always accurate.  But I don't know about false positives, just the large number of false negatives.

Keep asking questions here and you will find out.

Hugs,  Elaine

PS  I hope you feel better soon.

Now I'm Googling 'follicular lymphoma' which I've never heard of.
Female-Elaine,76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-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-Omega 3

cccourt1942

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Re: Can you test positive for SS-A and not have Sjogren's?
« Reply #2 on: September 14, 2015, 10:59:48 AM »
CD:  This is not the first time I have given this info:  SOMEWHERE in my myriad of reading about SjS I read positive ANA and Positive Ro (or SS-A) = sjogren's.  Lots of people say they were diagnosed with SS-B and ANA positive.  I question that.  Unfortunately I cannot find my source.  One of these days I shall find it again.  I will WRITE IT DOWN !!

In the meantime, where does one doctor come off contradicting another's findings??  Now then...if UPenn SjS clinic denies...well..they WON'T.  They will repeat tests.  But to make a cavalier statement and ignore the cold, hard fact--that's impudent at best!! 

As to men: One of the gender issues I have commented on more than once is how many of you men in "our" (women's) menopausal years' range is that you guys are picked up.  You guys are identified....because WE are told we are menopausal, we are empty nest, we have fibromyalgia, we are depressed (I could go on).  It is "rare" among men as the percentages say that.  I would estimate we are less than two full generations out of men who died at your age or younger (heart attacks, strokes, etc).  Many didn't live long enough to be diagnosed.  OLDER people ARE diagnosed with SjS.  Why?  Because the women are ignored.  I was 71 at dx age.  Though the statistics say there are "fewer" men---let's say I have a vocabulary issue of saying rare as opposed to fewer.  In fact --I think more men in their 20s are on this board than females in their 20s.  This is a guess...strictly that.  We have forum members from all over the world.  Again...this is a guess...but I seem to recall it SEEMS (to me) there are more men in their 20s to 30s on this board with SjS from other countries.  Don't take that as a given...you know our minds come and go with a) age and b) SjS.

BOTTOM LINE: KEEP THE APPOINTMENT.  (Hope you are near it!!)

Good luck.  Oh..and Carolina's points about all symptoms...right on.

ccc
Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene

Judie P

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Re: Can you test positive for SS-A and not have Sjogren's?
« Reply #3 on: September 14, 2015, 12:35:08 PM »
I was diagnosed with Primary SJS with two positive ANAs, and a very positive SS-A.  I started with the neurological end of it.  It took five years.
Primary SJS, SS-A >8, fibromyalgia, neuropathy, asthma, Effexor, Vitamin D 1,000mg, magnesium, Motrin, Ayr Nasal Gel, Ayr nasal mist, Optique 1 eye drops

Jude

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Re: Can you test positive for SS-A and not have Sjogren's?
« Reply #4 on: September 14, 2015, 12:52:00 PM »
I'm interested in any information about this too. I've recently had blood work come back positive for ANA (twice, at 1280) and for SSa, but my doctor only said it was highly probable that I have sjogrens, and is sending me for a lip biopsy. I'm starting to worry that that might come back negative, and then I won't have a diagnosis. I'm wondering therefore what the other diagnosis possibilities are for this case. I also have migraines, fatigue and Raynauds, my eyes are relatively dry, but I only have very mild dry mouth. I am female though, but only just turned 35 so on the younger end for diagnosis.

CD, I hope you get an answer soon, sjogrens or not. It's not a case of wanting an illness, but to put a name to the suffering.

A Mom on Spin

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Re: Can you test positive for SS-A and not have Sjogren's?
« Reply #5 on: September 14, 2015, 12:56:08 PM »
I know it is possible to have a positive ANA and be perfectly healthy - especially if you have a close family member with autoimmune issues.  Not at all sure if the same holds true with the addition of a positive SSA.

In my case, I was tested in 2010 because there's a strong family incidence of autoimmunity and my ANA and SSA were both positive.   But because I didn't have dry eyes or dry mouth, I opted not to be treated or even follow up with the rheumatologist.  Now in retrospect I see that was a BIG mistake. I started developing neurological problems long before I experienced dry eyes and dry mouth but had no idea that there was a connection. I now wish I had been more on top of my developing illness.

Keep that appointment at UPenn. 

Liz
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Primary SJS. RA & lupus. Positive ANA, SSA, anti-phospholipid Antibodies. Large and small fiber peripheral neuropathy

jazzlover

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Re: Can you test positive for SS-A and not have Sjogren's?
« Reply #6 on: September 14, 2015, 01:39:04 PM »
Never ignore a positive test in ANYTHING. Nothing is 100% .. just don't ignore it.

My rheumy is clueless about SJS.
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease

Judie P

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Re: Can you test positive for SS-A and not have Sjogren's?
« Reply #7 on: September 14, 2015, 05:06:56 PM »
Jude, you might be in the early stages of it.  I am.  My eye test only showed a slight decrease in production.  That is why they told me I was in the early stages of it.  Waiting for dental referral.  It may show nothing since early stage symptoms come and go.
Primary SJS, SS-A >8, fibromyalgia, neuropathy, asthma, Effexor, Vitamin D 1,000mg, magnesium, Motrin, Ayr Nasal Gel, Ayr nasal mist, Optique 1 eye drops

CarpeDiem

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Re: Can you test positive for SS-A and not have Sjogren's?
« Reply #8 on: September 15, 2015, 09:57:27 AM »
First I want to thank all of you for you replies and comments. I am glad I am not alone on an island here in my thinking and thought process.

Carolina, Follicular Lymphoma is a a type of non hodkin's lymphoma, It is an indolent cancer which means it grows very slowly. it is not "curable". If you are not symptomatic then the preferred treatment is watch and wait. Since Chemo does not "cure" it and it always comes back they monitor it to see if it begins to changes na become more aggressive. I go to my oncologiist every 3 months and twice a year they re- CT scan me. There is a link between non hodkin lymphoma and SS. I also had Hep C years ago. I treated and cleared (cured). There is a link between that and Non hodkins and also between hep C and SS. That is why I was a little surprised when the Rhuemy downplayed everythign. She did say that she would not rule it out but did not think I had it based on my symptoms or lack of dry eyes and dry mouth. She said I could get a lip biopsy but did not feel that was necessary. Also this all began when I went to a neurolgist for the numbness in my left foot that has bothered me for years. he ordered the tests that found this. He also did a EMG and said I have peripheral Neuropathy. He thinks it is from my back

Spinning Mom, I have a sister who has had auto immume problems for years. When I told her about all of this and the symptoms I am having she said I am describing her to a T.

I will definitely keep my appointment. Thank you everyone! You guys all are great :-*

Carolina

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Re: Can you test positive for SS-A and not have Sjogren's?
« Reply #9 on: September 15, 2015, 01:34:08 PM »
Ok, CD, out on a limb here.

A Rheumatologist that thinks Sjogren's 'always has dryness' would NOT BE THE RHEUMATOLOGIST for me.

Your foot numbness may be the beginning of peripheral neuropathy from Sjogren's, but really if it is from nerve damage in your back he should be able to tell.

Honestly, I demand good doctors with broad experience and even broader minds.

But I deliberately moved to an area that provides many doctors like that....and have a long history of medical issues, a husband who taught for 25 years in a Boston Medical School, and so on.

If you are early times in your 'medical experiences' you have an interesting road ahead.

However, except for medications for nerve pain (if you have it) there isn't a lot to be done for PN that isn't treatable at the cause (tumor, nerve compression, some Genetic conditions, some vitamin deficiencies, and so on).

And you probably aren't ready for the heavy hitters (Plaquenil, Methotrexate and so on) for Sjogren's (managing your Immune System in one way or another).

In general, with Immune Disorders there isn't a 'big rush' to treat, unless there are severe infections and illnesses threatening your life and health.

Now most of us have had our sanity and peace of mind threatened PLENTY with our Immune Disorders.  And I'm at the point with my PN of being more or less disabled.  But I look GREAT for my age...maybe that helps my vanity, but doesn't do much for my sanity for sure.

Keep us posted please.

Hugs, Elaine
Female-Elaine,76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-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-Omega 3

irish

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Re: Can you test positive for SS-A and not have Sjogren's?
« Reply #10 on: September 15, 2015, 07:48:59 PM »
Over the years it has been rare to find men with Sjogrens. However, with that being said, the autoimmune diseases are just now starting to get the press that they should.

Women are just in the past years gotten more diagnosis but it is still not easy to get doctors to listen. There are more men with Sjogrens and I am wondering if they are getting diagnosed more rapidly as they most likely are not being told it is in their heads.

My hubby and I have both had a bunch of autoimmune diseases and I have one son with Celiac(like his dad) plus this son's son has undiagnosed celiac. Pediatrician just told son to put the boy on gluten free with the history in our family. The boy had a whole lot of symptoms and was 4 years old. Doc felt instrusive to do all the testing. The boy is so much better on the diet and watches his diet like a hawk.

I also have a son with Hashimotos encephalopathy due to autoimmune disease. Two son's have some symptoms of Sjogrens and both think they have a milder form of disease. I think we will see more men with Sjogrens as time progresses. Irish