Author Topic: Positive SSB negative SSA-- no dry eyes or mouth  (Read 5936 times)

pepperworks

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Positive SSB negative SSA-- no dry eyes or mouth
« on: June 24, 2010, 11:37:53 AM »
My dr said he doesnt know what would be causing the positive SSb, I dont have any symptoms of dryness.  I do however have severe joint/muscle/tendon pain, fatigue, brain fog, memory loss etc..

He can't even give me a diagnosis, he just wants me to take plaqunil (sp?) >:(

I tested positive ANA speckeld 1:160
DNA negative
lups negative
RA tiny bit high

All other labs are normal

Anyone else have this experience?

hnybny91

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Re: Positive SSB negative SSA-- no dry eyes or mouth
« Reply #1 on: June 24, 2010, 11:42:09 AM »
That is me. Positive SSB negative SSA positive ANA in a speckled pattern.  No severe dryness but I have the severe fatigue and muscle pain.  I go back to the Rheumatologist in July.  I suspect she will confirm the Sjogren's diagnosis from everything I am reading on the internet.

pepperworks

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Re: Positive SSB negative SSA-- no dry eyes or mouth
« Reply #2 on: June 24, 2010, 11:49:08 AM »
My dr said I dont have sjogrens, it is driving me crazy, I guess maybe I need a second opinion. 

I hope you get some answers from your appt in July, i will be curious to know what your dr tells you..  did your dr. mention any treatment plan?


DragonflyC

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Re: Positive SSB negative SSA-- no dry eyes or mouth
« Reply #3 on: June 24, 2010, 12:07:31 PM »
While it's nice to have a clear diagnosis, treatment is the most important thing.

Plaquenil might help a lot, but it does take time to kick in--sometimes as much as a month or two.  Some people benefit from a low dose of prednisone for a short period of time (a few weeks) to get them on the right track until the plaquenil starts working, but that's not the right path for everyone.

Until you get a label, you can just tell people that you have an autoimmune condition, but the doctor isn't 100% sure which one.  A positive ANA usually indicates autoimmune activity, so you can give that much of an answer if you want to discuss your illness with anyone.

SS-B antibodies with an elevated ANA and aches and pains could be Sjogren's, but your doctor is correct that something else might be going on.  As frustrating as it may be, it sounds like he/she is pretty good--not committed to a specific diagnosis yet, but willing to treat your current symptoms (plaquenil for aches/pains/fatigue is a good call).  A lot of doctors won't prescribe anything unless they have a name for it. 
SJS, Hashimoto's, Raynaud's
Plaquenil, Evoxac, Restasis, Levoxyl, fish oil supplements, Vitamin D, NSAIDs, prednisone when flaring
Tested positive for SS-A ( > 8 ) and ANA (>1:640)

Visit me at http://sjogrensstyle.com for ideas about living well despite autoimmune disease.

pepperworks

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Re: Positive SSB negative SSA-- no dry eyes or mouth
« Reply #4 on: June 24, 2010, 12:15:20 PM »
it is very frustrating because he is not doing any further testing.  He just said he is not sure what I have, take meds.  That tells me he is either to lazy to do any further research, or he doesnt care.

I am not angry, nooooo... ::)


Carolina

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Re: Positive SSB negative SSA-- no dry eyes or mouth
« Reply #5 on: June 24, 2010, 12:21:59 PM »
Amen to Dragonfly

Actually I've never had anything be positive as far as a know.   Nothing on blood tests or lumbar puncture, no lip biopsy even done or ever contemplated.

But I have at least FOUR conditions related to autoimmunity, very dry eyes and mouth (Sjogren's according to my progressive  wonderful rheumy from years ago), interstitial cystitis (diagnosed by bladder cystoscopy) peripheral neuropathy (profound neuropathy diagnosed from the Nerve Conduction Velocity test) and now autonomic neuropathy (I have all the symptoms, or like three out of four categories).

I haven't actually started on ANY medication like plaquenil, prednisone or methotrexate.  But something has to be DONE as my PN is spreading to my hands and arms now.

My colon is shutting down, I"m dizzy with blood pressure drop when I stand up, I'm going deaf (more nerve damage) EEEK.

I see a new neurologist tomorrow and so much is riding on hoping he will help me.

The key is take the med, see if it works AND you can tolerate it.  If it helps and doesn't make you sicker than your current symptoms, hang in there for a while.

this is a trial and error condition or set of conditions.

Keep us posted.

Kisses

Carolina
Female-72-CVID-pSJS-IC-Periph.Neuro.-CAD-Osteoarthritis-Auto.Neuro-SFN-Anemia-Copper Def-Raynaud's Blepharitis,Meniere's/Deafness-Hiatal Hernia-IVIG-Gamunex-Medrol-Neurontin,Atenolol-Pilocarpine-Copper-Cymbalta-Nasonex-Lipitor-Estrogel-B-12-Iron-A Lipoic-D-Mannose-NAC-Co-Q10-Turmeric-Aleve-D3-Omega3

pepperworks

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Re: Positive SSB negative SSA-- no dry eyes or mouth
« Reply #6 on: June 24, 2010, 12:45:05 PM »
I am just not a "take meds and see if will work" kind of gal.  I have a very hard time putting chemicals in my body which could potentially cause other problems when I dont even know why I am taking it.

I know, I probably need a reality check....

Scottietottie

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Re: Positive SSB negative SSA-- no dry eyes or mouth
« Reply #7 on: June 24, 2010, 01:03:48 PM »
Hi  :)

Another way of looking at things is that the Plaquenil may make you feel better than you are right now and this if you tolerate it - and if you DO have Sjogren's - Plaquenil is a DMARD which can slow the progression of the disease and hopefully delay you ever getting the dryness.

Take care - Scottie  :)
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tomsmom

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Re: Positive SSB negative SSA-- no dry eyes or mouth
« Reply #8 on: June 24, 2010, 01:15:41 PM »
Hi Pepperworks,
I presented exactly the same way as you have.  Positive SS-B, speckled ANA, negative SS-A.  My GP was convinced,(based on my symptoms of extreme fatigue, muscle weakness and joint pain)before bloodwork came back, that I had Lupus.  I was a mess.  And still am most days.  :)
I got referred to a rheumatologist who said that my bloodwork indicated Sjogren's Syndrome not Lupus. 
Yes, you can have it without the dryness issues.  In fact, a lot of people don't get the dryness till much later. 

She threw me for a loop when she said that although I have positive blood work, she sees evidence of something else autoimmune and she thinks the Sjogren's Syndrome is secondary to that.  I don't have a label for the predominant autoimmune disorder (she calls it overlap) and I'm ok with waiting until it rears it's ugly head in my bloodwork and I get a name for it.  She treats me with Plaquenil and steroids during severe flare ups.  It's important to have a doctor who'll not only treat based upon bloodwork, but will rely on symptoms as well.  DragonflyC is correct in that  treatment is the most important thing.

No one wants to be on medication but please give the Plaquenil a try.  It's the first drug rheumy's try for a variety of autoimmune conditons.  Also, it's a disease modifier, so you may be catching the autoimmune process in time before it advances to a stage where you don't want to be.  It, like many other medications has it's side effects, but it has a lot less than the other drugs to manage this and other autoimmune conditions.
If you take it, remember to always take it with food and get your initial eye exam (and every 6months thereafter).  I wish you luck!
« Last Edit: June 24, 2010, 01:19:35 PM by tomsmom »
Myasthenia Gravis, Secondary Sjogren's Syndrome, Raynauds, Graves Disease, Hypertension, Hiatal Hernia.

Meds: Toprol XL, Plaquenil, Mestinon, Protonix, Fish Oil, Vitamin D
34 yr old stay at home mommy

Suzy

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Re: Positive SSB negative SSA-- no dry eyes or mouth
« Reply #9 on: June 24, 2010, 02:42:57 PM »
Hey Pepperworks,

I totally agree with Tomsmom. I have all the Sjogren's blood markers (and then some), but I didn't have any dryness for years and years. Now that I do it comes and goes but has not been severe enough to require prescription drugs.

I was very resisitant to Plaquenil for many years because I was young when I was diagnosed (21) and didn't want to go on a long-term drug. But now the disease has progressed so much that I wish I had started it sooner. As a few people have said, it can slow the progress of the disease. Think about it: if it calms your immune system, then it's not attacking and damaging your body. I started it in March and have had zero side effects. I take it with breakfast and dinner. Easy easy.

I know it's frustrating that you don't have a definite diagnosis, but I agree that's a sign your rheumy is good. Even though I had already been diagnosed, my current rheumy wouldn't call it Sjogren's until I dug up my original salivary gland biopsy. I was so annoyed, but now I understand that if you just look at my bloodwork, I could have Lupus, RA, Sclero, etc, etc. With autoimmune disease, it's a waiting game that can take many years. Often the disease gradually unfolds and presents itself. I know mine has over the past 13 years.

Anyway, let us know what you decide to do!
Suzy  :)
I'm a 37-year-old stay-at-home mom to two little boys ages 8yrs and 4yrs.

Sjogren's DX '97, Raynaud's, Superficial Parotidectomy, Cholestasis of Pregnancy, Gilbert's, Vasculitis, Fibro, B12 & D Deficiency, Drug Allergies

Plaquenil, Lyrica, Rituxan, Vit D, B-Complex, Biotin, Calcium, Soothe XP

pepperworks

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Re: Positive SSB negative SSA-- no dry eyes or mouth
« Reply #10 on: June 24, 2010, 03:01:14 PM »
Thanks for all the support, I am having a hard time wrapping my head around all of this, 2 years ago I was fine and now I cant walk to the bathroom without severe pain.

I have been passed around to so many doctors I really don't trust any of them.  That is why I have a hard time with the "I don't know" but take meds diagnosis.  I understand the point of taking meds to slow the progression but I guess my question is slow the progression of what?   The Rhumetologist said he doesnt think I have Sjogren's.  He said:

It could be something that we dont know about
It could be something that has yet to surface
It could be low grade lupus-- even though I have had a billion tests and lupus is always negative


It is a lot to process at one time.  I will continue to research and maybe consider meds..

DragonflyC

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Re: Positive SSB negative SSA-- no dry eyes or mouth
« Reply #11 on: June 24, 2010, 07:44:20 PM »
I know it's frustrating, but AI conditions are slippery, tricky things. 

Your doctor has run through most of the tests that make sense now.  I can see why he/she wants to see if plaquenil works before continuing to research.  It's a med that works for a variety of AI conditions, so it's a logical starting point. 

Having a disease but not having any answers is incredibly frustrating, so let yourself go through the emotions as they come.  Remember that you can come here to vent anytime--we definitely understand what you are going through. 

Most of us, in fact, have some uncertainties about our diagnoses (personally, I'm not so sure about that lupus label they gave me; I think it might all be SJS) or have been labeled and then unlabeled a variety of times.  There was a recent thread in which a bunch of people shared the experience of being told that they had MS only to learn years later, "Oops!  It's not MS; it's Sjogren's!  Sorry about that."  Crazy, right?  Unfortunately, that's why doctors struggle with AI conditions: they overlap, mimic each other, "travel in packs," have unclear blood work and symptoms, and can change over time.  Bah.
SJS, Hashimoto's, Raynaud's
Plaquenil, Evoxac, Restasis, Levoxyl, fish oil supplements, Vitamin D, NSAIDs, prednisone when flaring
Tested positive for SS-A ( > 8 ) and ANA (>1:640)

Visit me at http://sjogrensstyle.com for ideas about living well despite autoimmune disease.

Blue Kat

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Re: Positive SSB negative SSA-- no dry eyes or mouth
« Reply #12 on: June 24, 2010, 07:56:26 PM »
pepperworks,

I have a positive SS-A and SS-B.  Like you, I have no dryness issues but plenty of the pain, fatigue and brain fog symptoms.  My doctor did diagnose me with Sjogren's and I have been on Plaquenil nearly a year ago and it's helped some, but of course not enough to my liking.  I hope you can get a proper diagnoses soon!

pepperworks

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Re: Positive SSB negative SSA-- no dry eyes or mouth
« Reply #13 on: June 24, 2010, 08:16:20 PM »
I wonder if it is genetic?  My mom has had problems all her adult life, I don't know if she was ever tested.  She does have RA..   

Why would my Rh told me that I don't have sjogren.  It just doesn't make sense.

I know, I know.. just drink the kool-aid...  lol ;D




Suzy

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Re: Positive SSB negative SSA-- no dry eyes or mouth
« Reply #14 on: June 24, 2010, 08:58:27 PM »
I think there's definitely a hereditary predisposition, as well as something that triggers the immune system. A lot of us have family members with autoimmune issues. My grandfather had RA at young age and my mom has hypothyroid and SEVERE dry eye (worse than mine) but has been told she doesn't have SS.

I'm a 37-year-old stay-at-home mom to two little boys ages 8yrs and 4yrs.

Sjogren's DX '97, Raynaud's, Superficial Parotidectomy, Cholestasis of Pregnancy, Gilbert's, Vasculitis, Fibro, B12 & D Deficiency, Drug Allergies

Plaquenil, Lyrica, Rituxan, Vit D, B-Complex, Biotin, Calcium, Soothe XP