[darlindeb25]

So, is there a difference? When my sleep doc told me I may have Sicca Syndrome, I had never heard of it. When I researched it online, not much is said about Sicca, and often refers back to Sjogrens. I found this:

http://palm.skynetmd.com/skymain_sea...lm&li=palm&v=2


Quote:
If the person has symptoms suggestive of Sjogren's, such as excessive dryness of the eyes and mouth, thirst, gritty sensation in the eyes, red injected eyes, mouth sores, abnormal taste, cavities, recurrent nosebleeds, cough, hoarseness, swelling in front of the ears (parotid enlargement), arthritis like symptoms.

I have a mouth full of fillings, and now, broken teeth. I have been diagnosed with dry eyes, although my boss, also my optometrist, says it's hormonal or allergies, so I use Refresh or Systane Ultra every day. The gritty sensation in my eyes is a daily occurance. The dry throat started last year, and now that I have a CPAP machine, I am finding the dryness much worse, with my tongue stuck to the roof of my mouth every morning, waking throughout the night needing a drink. Years ago, my voice changed to the deep, raspy voice I have now. I spend most of one summer with no voice at all. Dry nasal passages is a daily occurance too.

Is this something you develop, or are you possibly born with it? All of my problems stem from my celiac/gluten intolerance, that I know. My carpal tunnel was diagnosed before I was gluten free, Raynauds hit me years ago, aching joints, trouble swallowing certain foods, etc.

Yesterday, the doc I work for asked me about my neuro visit. When I mentioned Sicca Syndrome, I could tell he wasn't sure what I was talking about, so I gave him the connection to Sjogrens. He walked away, then came back in a bit and asked, "Can you eat 3 crackers?" By this time, I wasn't thinking ab out our talk earlier and I just gave him a look and said, "I can't eat crackers, I'm celiac, remember?" "Well, if you can eat 3 crackers, then you don't have Sjogrens." Now that's a diagnosis if ever I heard one!!! Much cheaper than lab work and such!!!!

I am going Friday for more blood tests. Any info any of you can give me is greatly appreciated.

Thank you.

[Megan]

Hi darlindeb,

Did he mean three crackers, dry, without anything on them?

That could be true I haven't a clue - but how funny is that "much cheaper than lab work and such"!!! If only! Very scientific - lol!

[dahlek]

I take it he's kind of a 'know it all'? But, not really much of anything......
I hope you can find an active Sjorgen's group, I KNOW there is one out there and I know from reading Silverlady's experiences and having met in my neighborhood one so afflicted that it's miserable stuff. I truly do hope that isn't YOUR case tho.
Upon Silverlady's suggestions [Billye] Ive been using the Biotene Oral Balance LIQUID..more like a lotion/glop stuff. I keep a bottle of the spray next to my bed for the wake-up-in-the-nite with GLUE mouth situations tho.... It has helped keep my teeth healthier I think... My cavitiy and crown costs have dropped DRAMATICALLY due to this stuff. I mention it to the dental techs and they always go 'We always tell everyone about it!' HUH? Not one dental person has ever told me to use this stuff...ever. DUH.
Know too that the meds we take can do a number on our teeth. Pain meds and Neurotin, Lyrica or other seizure and anti-depressants do sap a lot of that calcium from you! Not to mention that your body isn't running on all four cylinders well anyhow? Mrs D's advice about taking calciums with Vit D, and Magnesiums are really key to keeping the tooth drill at bay.
Welcome to supplement CITY!
As for this being genetic? There isn't a lot of research done w/all of this, just as there's not been with a heap of neuropathy issues. Unless it's clearly diabetic, stroke or cancer induced there isn't a heap of research going on, nor will there be - those squeaky wheels get the grease. We benefit as an afterthought.
As for cheaper than testing? Again, DUH? And also WHA? Wouldn't testing be cheaper than a lifetime of inadequate meds and the side-effects they bring?
Maybe I can win the BIG lottery and make a difference - one can always hope. Hugs and hope to you good person! - j

[darlindeb25]

Ive been using the Biotene Oral Balance LIQUID..

I asked my sleep doc about using this and he said NO. Why? The man has sleep apnea too, he must have suffered dry mouth at one time or another. My dry mouth has gotten worse with the CPAP, but I had it before CPAP too. Dry eyes too, and now, I have lots of red lines in my eyes, I used to have such pretty dark brown eyes.

I am so tired of no real answers.

I hope you can find an active Sjorgen's group, I KNOW there is one out there and I know from reading Silverlady's experiences and having met in my neighborhood one so afflicted that it's miserable stuff. I truly do hope that isn't YOUR case tho

Me too, I don't want to be a member of this support group...I mean, how many support groups does one person need?

Did he mean three crackers, dry, without anything on them?

Yeah, he meant 3 dry crackers. I guess if you can't deal with 3 dry crackers, then you must have Sjogrens!!! I do not eat any crackers, I do not eat any grains. So, I can't do this test.

[Raglet]

I have sjogrens, along with my lupus and antiphospholipid syndrome. Treatment for sjogrens is mostly symptomatic (eye drops etc) so whether or not you have sjogrens (the blood tests will clinch that as there are antibodies that are used to dx sjogrens) then it makes sense to treat your symptoms.

It sounds like CPAP may well be playing a role in drying you out a lot as well.

best of luck with it all

raglet

[cyclelops]

My issues started with sicca syndrome.

I now have lip biopsy proven, seronegative sjogrens.

Depending on what material you read, sjogren's is blown off as dry eyes and mouth, or a systemic disease.

I would not rule out spondyloarthropathies coexisting with neuropathy. Sjogren's also comes with neuropathy. There is growing evidence that seronegative, biopsy +, Sjogrens is associated with neuropathy. Make sure they draw your 'complements.'

You may be seronegative, and depending on the doc, you will be told either you do have or do not have Sjogren's.

You can get a minor salivary gland biopsy. Mine is full of lymphocytes....It is such a mess, I don't think they have a focal score for it. I was shocked when my doc showed me the slide.

Sicca can come just from neuropathy which has affected the nerves that innervate those organs, however, you won't have the lymphocytic infiltration, which is inflammatory.

I would pursue this.

Also, it is probably possible that the CPAP is drying your mouth and nose....some mask leakage would dry the eyes too, or it can be pushing up air thru your nasolacrimal duct which terminates in the inner canthus of the eye in a little hole. Can they humidify the CPAP?

[Mike2]

I'm new to this site and all I can gather is that there is not much that can be done for SICCA/Sjogren's.
I started with dry mouth about 5 years back, hardly noticed at first, then day time occasionally, then night, now day in day out without cease. Polythylene Oxide Lozenges give some relief - just suck them for ever, even overnight; they make the mouth slimy.
Mid 2008 got up one day with eyes out of a horror movie, have seen doctors, ophthalmic people and a specialist, but basically they put it all down to SICCA and look lost.... and pessimistic. My General Practiitioner has tried to be reassuiring, saying he now understands why I have seemed to complain so much about my rheumatoid arthritis despite my ridiculously healthy lifetsyle. Had a test by a German narturopath. who measured my secretory IgA, produced by mucus memranes and essential to the immune system at 279 compared with a normal range of 510-2040, but I've no idea what that really means, except it is clearly low.
I know this leads on to lung and kidney problems. in other words, its bad news. worse news is that as far as research is concerned it seems off the radar. Does anyone know wher this leads to?
Incidentally Biotene for me does very little, gives a few minutes relief but that's it.
.

Originally Posted by dahlek

I take it he's kind of a 'know it all'? But, not really much of anything......
I hope you can find an active Sjorgen's group, I KNOW there is one out there and I know from reading Silverlady's experiences and having met in my neighborhood one so afflicted that it's miserable stuff. I truly do hope that isn't YOUR case tho.
Upon Silverlady's suggestions [Billye] Ive been using the Biotene Oral Balance LIQUID..more like a lotion/glop stuff. I keep a bottle of the spray next to my bed for the wake-up-in-the-nite with GLUE mouth situations tho.... It has helped keep my teeth healthier I think... My cavitiy and crown costs have dropped DRAMATICALLY due to this stuff. I mention it to the dental techs and they always go 'We always tell everyone about it!' HUH? Not one dental person has ever told me to use this stuff...ever. DUH.
Know too that the meds we take can do a number on our teeth. Pain meds and Neurotin, Lyrica or other seizure and anti-depressants do sap a lot of that calcium from you! Not to mention that your body isn't running on all four cylinders well anyhow? Mrs D's advice about taking calciums with Vit D, and Magnesiums are really key to keeping the tooth drill at bay.
Welcome to supplement CITY!
As for this being genetic? There isn't a lot of research done w/all of this, just as there's not been with a heap of neuropathy issues. Unless it's clearly diabetic, stroke or cancer induced there isn't a heap of research going on, nor will there be - those squeaky wheels get the grease. We benefit as an afterthought.
As for cheaper than testing? Again, DUH? And also WHA? Wouldn't testing be cheaper than a lifetime of inadequate meds and the side-effects they bring?
Maybe I can win the BIG lottery and make a difference - one can always hope. Hugs and hope to you good person! - j

[darlindeb25]

Well, when my tests came back, the neuro says negative for Sicca. The dryness continues, although it isn't as bad when the weather changes. Then the allergy season kicks in to full force, trade one problem for another. I keep Systane Ultra on hand. Some days my eyes are like a beach, sand everywhere, then other days they seem ok. My dry mouth is worse at night, and it doesn't seem to matter what I try with the CPAP.

Just another thing I have to learn to live with.

Welcome to the forum Mike.

[Raglet]

yay, it's good news that you tested negative, who wants to pick up another 'disease', kwim?

Actually I find sugarfree chewing gum as helpful as anything else for my mouth dryness (I have sjogrens) - while for my eyes I use artificial tears (without preservative as I am allergic to it).

Various meds can also contribute towards dry mouth, so it may be illumanating to check any medication that you are on.

cheers

raglet

[Mermaid2260]

.
Hello,

I am new and, frustrated but I can still smile. My opthamologist spoke more openly about sjogrens than my rheumatologist. It affects not only our eye, nose, ears, throat, teeth, also our lungs, and kidneys, and gives a lot of fatigue when highly symptomatic.

I will eat crackers multigrain and, make sure a glass of water is near me!
My teeth well need to see a Dentist soon...not to bad but, medication like prednisone is also bad for our teeth.

I know Sjogrens is in our Genes and, who will develope it...who knows? I have a family with Lupus, Juvenile RA, Vasculitis, Diabetes...So I think it all depends on just how strong our gene is; does this make sense?

I have been tested positive for Lupus, Sjogrens, Seizures, Depression (well I do not believe this anymore..meds are being decreased...I do what I need to do to feel better). Raynauds, carpal tunnel, Communicating Hydrocephalous Normal Pressure, fibromyalgia...but ya know looking at me you would think their is nothing wrong with me. A lot has to do with avoiding stress; well excess stress & negative people, educating yourself, and finding another Doctor if you are not happy with what he's telling you to do...especially when you have done your research.

Hope this helps & I hope to hear from someone!

What has me baffled is My neurologist just told me NOT to sleep as I do he wants me to sleep when I get sleepy and wake up at 6:00 a.m. everyday. I will try it...but I do not think this will work. I am also wearing a heart monitor and it wakes me up at night. You know Doctors should consider ALL WE ARE DIAGNOSED WITH, but a good Dr. these days is difficult to find.

Hope all have a nice day!