Author Topic: Can you have Sjogren's without dry eyes and dry mouth?  (Read 4896 times)

chucksusanb

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Can you have Sjogren's without dry eyes and dry mouth?
« on: September 20, 2010, 08:23:21 PM »
Hello everyone,

I am thankful to have found this site.  I have been having a myriad of medical problems.  I went to a new Rhuematologist back in November and she thought my symptoms sounded like Sjogrens.

I only tested positive to ANA and ACA antibodies.  Also am low in vitamin D, B1, B12 and iron

I just went for another followup and again she asked about dry eye and dry mouth, but I don't have that.

I do have bad costochondritis and burning in my lungs(feels like hot lungs), my nose, dry cough GERDS (or so it appears), numbness and tingling in the limbs, weakness and I am sure I am forgetting other symptoms.

My question is, could I have sjogrens without dry eyes or dry mouth?  Is that even possible??

I am getting a full body bone scan tomorrow.  I've also had MRI/MRA of the brain, cervical spine and lumbar spine. Had lumbar puncture (spinal tap), EMG/NC and a ton of other tests.

I am waiting the results from my endoscopy of the large intestines.  They did a biopsy for celiac and also h pylori.

Thank you kindly and God Bless all of you,

Susan

Patze

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Re: Can you have Sjogren's without dry eyes and dry mouth?
« Reply #1 on: September 20, 2010, 09:06:09 PM »
Hi Susan,

Let me also welcome you to the SJS World and family!  Please do look around the board as there are tons of topics about being sero negative to those folks that have positive blood work and have no symptoms what so ever (and tons in between).

You asked if you could have SJS without the dry eyes and mouth, the way I look at it, anything is possible (I'm not in the medical field so I can't diagnose or anything like that).  I'm also glad to see that you're doctor seems to be pretty sharp; lucky you!

Even though I'm sero negative, I have terrible eyes, but my mouth is pretty much normal (other than developing a lot of weird things over the years).

Oh boy, GERD, that sure seems to be afflicting a lot of members here, and it can cause sinus problems, feeling like you're getting a cold, and coughing too (yeah, have that mess as well, to the point where I'm on my fourth PPI and I have to take it twice a day; still having problems).

I sure hope that your tests come back soon as the waiting must be driving you batty!

Take extra special care and I hope that you can join us in the chat room soon -

Patze
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mom16

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Re: Can you have Sjogren's without dry eyes and dry mouth?
« Reply #2 on: September 20, 2010, 10:17:28 PM »
Hi and welcome,

I don't have dry eye or dry mouth. I have small fiber neuropathy and positive bloodwork (SSA and ANA).

I think it can happen, but it's not as common.

I'll be interested to read what others say.

 
 
Primary SJS with small fiber neuropathy.  Plaquenil, Neurontin,  and Cymbalta
Female-46

irish

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Re: Can you have Sjogren's without dry eyes and dry mouth?
« Reply #3 on: September 20, 2010, 11:20:15 PM »
Susan, Welcome to this site. Lots of good info here from many caring people. I don't know if you checked the home page and clicked on articles, but there are many articles on neurological problems. Many times the neurological issues are the first ones to pop up. Many times it is years later before the dryness shows up.

I had Sjogrens about 40+ years and I didn't get the dry eyes until several months after I got diagnosed. I got diagnosed in 2003 when I was 60 years old and had issues since 20 years. Don't let the docs get hung up on the dryness issues. Sometimes it takes time. It can also take time to have blood work show up positive also. I didn't have a positive ANA until a couple of years after I was diagnosed. This is just a tricky disease to nail down. Sometimes the best you can hope for is to get treated for the symptoms.

Also, many docs don't like to throw a diagnosis at people because it can cause people to have problems with their insurance if they try to change companies. The savvy docs will treat all those darn neurological issues and put a person on Plaquenil also. Plaquenil is used an an anti-inflammatory and helps reduce a lot of the aches, swelling, fatigue, etc. Good luck. Irish ;D

tomsmom

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Re: Can you have Sjogren's without dry eyes and dry mouth?
« Reply #4 on: September 21, 2010, 07:52:20 AM »
Susan,
Hi and welcome! 
I was diagnosed with Sjogren's Syndrome almost 2 years ago.  I have yet to have dryness issues...  Every other miserable symptoms it seems, but no dryness issues to speak of yet.  :)
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

Scottietottie

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Re: Can you have Sjogren's without dry eyes and dry mouth?
« Reply #5 on: September 21, 2010, 10:29:34 AM »
Hi Susan  :)

Welcome to Sjogren's world.

As Sjogren's is a progressive disease (slowly in most cases) - and everyone is different - I see no reason why 'dry symptoms' may come later rather than sooner. I'm not a medic so this is just an opinion. I have read about people with positive bloodwork without the dryness issues.

I hope that all the tests you have had come up with some answers. Keep us posted!

Hope you find the site useful.

Take care - Scottie  :)
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chucksusanb

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Re: Can you have Sjogren's without dry eyes and dry mouth?
« Reply #6 on: September 22, 2010, 08:11:57 AM »
I just picked up my blood work from the Rhuemy, although my "official" appt isn't for another 5 weeks.  She will get me in sooner though if I need to.

Ijust went for my full body bone scan yesterday.

But my blood results came back with a

elevated CRP (C Reactive Protein)
elevated level of CH50
elevated ACA (anticardiolipin antibodies)

Surprisingly, my ANA has been negative and it has been as of the last year or so.  Strange because my symptoms are actually much more frequent.

I'm wondering what is going on...

Suelaw

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Re: Can you have Sjogren's without dry eyes and dry mouth?
« Reply #7 on: June 20, 2013, 05:21:52 PM »
Hi I've just been diagnosed with Sj?gren's syndrome but have no idea about bloods apart from ANA positive. I don't have dry eyes or mouth and suffer only a little joint pain and some tiredness, I'm wondering if I've been given a wrong diagnosis. Oh I have some bowel issues but that's it.

jazzlover

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Re: Can you have Sjogren's without dry eyes and dry mouth?
« Reply #8 on: June 20, 2013, 07:20:09 PM »
I have dry eyes, not extremely dry mouth.
Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib, neuropathy, plantar fasciitis

SjoGirl

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Re: Can you have Sjogren's without dry eyes and dry mouth?
« Reply #9 on: June 20, 2013, 07:31:00 PM »
Symptoms and bloodwork can differ from person to person and in one person over time. AIs take up to seven year to declare themselves so test results may change as the situation progresses.

I had both dry eyes and mouth at the outset, but mouth started to get better after I had an H Pylori infection treated. Eyes continue to be dry but with Retasis I can produce tears.

Sound like you are receiving great care and good diagnostic testing. Hang in there and know there can be more than one thing going on (AI unfortunately don't tend to come one at a time).
Raynauds, SjS, Anemia, neutropenia, leukopenia, thrombocytopenia, osteopenia, Plaquenil, Fosomax, multivitamin with iron, Vitamin D, and Feosol (if my iron levels really dip).

Cassi307

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Re: Can you have Sjogren's without dry eyes and dry mouth?
« Reply #10 on: June 20, 2013, 10:16:26 PM »
Chucksusanb
As others have ndicated everyone presents with different symptoms. I was diagnosed several months ago but have been having a variety of symptoms over the years. My rheumatologist said that she believes I have had this for a long time. I did not get dry eyes or dry mouth (or maybe didn't notice) until just before I was diagnosed.

Sounds like you are getting really good care. Keep a symptom journal. It may help you as you seek continued treatment.

Sjogren's with myositis overlap,  ckd, asthma, chronic costochondritis, osteopenia, neuropathy, Plaquenil, cardizem, low dose aspirin, krill oil, Lyrica, Salogen

Sleepy In Seattle

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Re: Can you have Sjogren's without dry eyes and dry mouth?
« Reply #11 on: June 21, 2013, 10:15:37 AM »
I was pretty sure I had Lupus, but had never heard of Sjogren's when my doc came into the room and told me I had it. (My blood work doesn't leave much to the imagination...).

My worst symptoms were extreme fatigue, joint pain, brain fog, and a host of other little things...moderately dry mouth on and off, but not ever really dry eyes.

The good news is that catching it early (before bad symptoms) is GOOD! And with treatment, all my symptoms are MUCH better. It has also helped me a lot to go on a low-carb, gluten-free, dairy-free, soy-free diet.

Best of luck to you in this...do lots of research, and never stop asking questions!!!!!
Sjogren's, Lupus, Raynaud's, APS
Fatigue, Brain Fog, Autoimmune Hearing Loss, joint/muscle pain, dry mouth, clots in retina, etc :p
Supplements, Plaquenil 400mg/day, Aspirin 325mg/day (for APS), Methotrexate 10mg/2x per week, Prednisone 5mg/day

Nancy60

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Re: Can you have Sjogren's without dry eyes and dry mouth?
« Reply #12 on: June 21, 2013, 11:04:33 AM »
I believe there are people who if caught early, initially don't have dry eyes or mouth, but they develop them over time. On the other hand I initially didn't go to the doctor about dry eyes and mouth, I had fatigue, joint pain etc.  but when they tested I did have significant dryness, it just felt normal to me. I was ANA positive but it was a couple years before my SSA turned positive. Have you had a schirmers ir salivary flow test to see if you have decreased production. You might ask your doctor about ir.

Nancy

quietdynamics

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Re: Can you have Sjogren's without dry eyes and dry mouth?
« Reply #13 on: June 21, 2013, 11:14:40 AM »
The sicca/dryness comes on gradually...so by the time you notice; when everything is really dry...the process has been ongoing.

Since I did a lot of talking in my work I was always sipping water and chewing sugarless gum, so I did not notice for quite a long time. Until a few teeth starting chipping, even then. I thought calcium? Certainly not this.

Then my eyes swelled closed and were dripping tears. It was a weekend, so I had to go to ER and they said allergies. But, it was probably more an overload of irritants+dryness. I did not have the "quality" and/or quantity of normal tears to protect eyes, before the cumulative onslaught...it was spring and I had never had this happen before, ever. ( That was probably one of my first major flares...but who knew? You just push through)

Dentist did not say anything, eye Dr. gave me samples.
I am still really excited about the test that will hopefully be in the hands of Dentists, Eye Drs, GP's, etc., for early detection.
Plaquinel is reported to work best at early stage (remission). And the number on misdiagnosed and undiagnosed is estimated in ...Millions; for an estimated average of 6-10 years to actual Dx and treatment.

Hoping for progress for the next generation... :)

In essence the cornea may be fluid staved and one is not yet aware...
. Schirmer’s test to measure tear production
· Vital dye staining (the use of colored eye drops) to examine the eye’s surface for dry spots
· Osmolality to measure the body’s water balance
· Tearlab to measure the osmolality of the tears
« Last Edit: June 21, 2013, 11:36:52 AM by quietdynamics »
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea

Johnson

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Re: Can you have Sjogren's without dry eyes and dry mouth?
« Reply #14 on: June 22, 2013, 11:30:48 PM »
I know the time my doctor asked me if I had dry eyes or mouth I answered "I don't know. " A low white cell count since very young leads me to believe that I had it for most of my life. I didn't even realize until he mentioned it....
"Do not anticipate trouble, or worry about what may never happen. Keep in the sunlight."  -Benjamin Franklin