Sicca/Sjogrens Syndrome
 

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.

Dry crackers!
 

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!

Hummm, the guy you work for?
 

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. :eek:
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

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.

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

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.:confused:

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

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?

Yes, my CPAP has a humidifier, and I have it running on the highest setting, per doctor's order. Yes, the dryness has gotten worse since having the CPAP, yet it was there long before I was diagnosed with sleep apnea. I was diagnosed with dry eyes well over 2 years ago. The dry mouth and throat started last winter, I have only had the CPAP for 4 months. Difficulty swallowing some foods has been going on for years. This was happening before I was gluten free, over 8 yrs ago. It had happened much less, until CPAP, now it's back.

I had the blood work done today, we will see what the results are, and go from there.

i found my mouth getting very dry while using the nose pillows for the cpap machine. since switching to the mask that covers both the nose and mouth i have not had a problem with dry mouth. Its unbelievable how dry your mouth can get. what a feeling to wake up to.

Echoes long ago...I'm sorry we get to share this too!:( I do believe the CPAP is making it worse, along with the fact, I do not think I have the proper CPAP to begin with. I did have the dry mouth before CPAP though, much worse in the winter. I much prefer the nasal pillows, I had a terrible time with the nasal mask, and I'm sure I would fight with the full face mask. I hate anything touching me, and the nasal mask hurt my face. Besides, I am a side sleeper, and it's so hard to keep them from leaking! By the way, the nasal pillows do not cause a leak to your eyes, I do much prefer this mask.

Two of my sons are doing so well with their CPAP's, and both prefer the full face mask...of course, they have more face for it to fit on. As my sleep doc says...anyone with sleep apnea is equal, even though some are worse than others, he hates the mild, moderate, and severe range labeling. Both my sons are severe, I fall under the mild range, but have low oxygen levels and insomnia.

Have they ever connected sleep apnea to neuropathy?

for me no, but the pulmonary doctor is sure it is linked to my exposure related problems.

Oh yeah, that I know and understand. I just meant as a rule I wonder if it's related to neuropathy. So many people have both. I have this "princess and the pea" syndrome with my neuropathy, and someone in my sleep forum also has the same neuropathy. Just seems a little weird!

Of couse, as a rule, none of us have just neuropathy, there is nearly always an underlying cause.

could be something like the double crush syndrome that Glenn talks about, perhaps the long term lower levels of oxygen saturation in the blood due to sleep apnia exacerbates an already existing but milder PN by bringing on greater damage.

all i know is im sick of going to doctors.

pun intended

I am just going to squish this new finding of mine in this thread, as it kind of goes with the Sjogren's thing. I had a lab come back with an abnormal CD4/CD8 ratio....CD4 too high, (AKA) T helper cells are too high. I don't know for sure what this means yet.....there are a few diseases coming to mind. However, my point is, it is HARD to get to the bottom of these symptoms. My seroneg. Sjogren's may be something totally different, which I am not going to speculate on the board until I know more. So push on to get the tests, push on with your research.

If you had dry eyes and mouth before CPAP, and it was not related to medication, get tested for Sjogren's. You will likely have the blood tests, and if those are negative, you can have the lip biopsy. If you have a positive lip biopsy, it can mean several things. Sjogrens (seroneg), psoriasis, sarcoidosis, lymphomas etc.....or simply sialadenitis.

Then if you have one of these autoimmune diseases, you have decisions to make.

Me too, I'm sicca of doctors too!:p

Yes Cyclelops, I had the dry eyes and mouth before CPAP and medicines were not involved.

I did have the blood work done yesterday, so we will see soon what comes up.

Your blood work results are beyond my knowledge!!!

You have given a whole new meaning to sicca syndrome. I, too, am sicca doctors.

:D:D

We get tossed back and forth like badmitton birdies.:eek: I like my PCP, my neuro, and my sleep doctor, I just leave them very discouraged often times. My neuropathy is not progressing anymore, that's wonderful, and I give all the credit to B12. I have been having this pain in my left hip, sometimes almost putting me on the floor..not sure if it's the neuropathy or arthritis. My biggest problem now are my headaches. They seem to be getting worse all the time. Friday, the pain was as close to a migraine as it could possibly get, I couldn't stand light, I couldn't eat, I just wanted to lay still in the dark.

If the neuro is right, and the headaches are muscular, then I hope in another week or 2, the Wellbutrin will kick in and change my anxiety and stress levels. Thankfully, I am not suffering any side effects from it. Usually the side effects of meds are greatly magnified, probably because of my malabsorption problems.

I do not want to have Sicca, yet if I do, I want to catch it as early as possible.

I am not sure...
 

If this pertains to anyone here.

But I am going to bring it up anyway. I just finished a long CE lesson on Hep C and this was contained in it.

1) you can have Hep C and not know it. Some cases are very mild, and people recover from it and think it was a "flu" or other viral illness.(the virus remains however).

2) Hep C causes dry eye syndrome:
http://www.osnsupersite.com/view.aspx?rid=24631

http://www.hepcaustralia.com.au/inde...nd-hepatitis-c

So if anyone here has sicca symptoms and has not been tested for Hep C...I'd suggest you have that done.

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.
.

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.

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

Thanks Raglet, and yes, I do not want another syndrome, I have enough. However, I do want this dryness to stop.

The only med I am on is Wellbutrin, but the dryness was well underway before I took Wellbutrin. Some tell me it's the CPAP. My sleep doc had me set the humidity to high, which I did. That hasn't helped. My mask is not blowing in my eyes, that's another opinion. I use nasal pillows, I just can not tolerate the nasal mask and I know I could not handle a full face mask. Nasal pillows never cause air around my eyes. Some say I may be sleeping with my mouth open, so we ordered a chin strap...about drove me nuts, and it kept making my nasal pillows leak. The last few nights, I have noticed my mouth is even dryer, and I can't be sleeping with my mouth open, because even my lips are stuck together, no need for tape!:p Which by the way, my doctor is totally against, and I will not try because most tape peels my skin off.

I honestly feel the dryness is not caused by the CPAP, maybe aggravated, but not caused. I had the dryness long before I had the CPAP.

Always something, isn't it???

Just another update on this issue of sicca syndrome, and sero-negative Sjogrens. I had that elevated CD4/CD8 ratio, which ended me up in a hematologist office, which ended me up with a CT with contrast....and pulmonary fibrosis in my lungs. I am seeing a pulmonologist and rheum, PFTs are scheduled, and I assume more tests. There may be a bottom to this somewhere.

This is looking more like Sarcoidosis. I did a bit of research on this, and found initial info I saw was really cursory. The deeper you dig, the more you find. Sarcoidosis has a lot in common with Sjogren's except the positive blood work.

Well, I have learned to take things one day at a time, and not expect a lot from any given finding. Again it takes a good doc to put things all together.

I certainly hope you do get to the bottom of this. It's not fun not knowing what's going on, and even worse, having a doctor tell you there is nothing wrong, when you know there is.

Hi I can relate to this a lot. I am on my 9th eye specialist and am worse from dry eye and the pain it causes is unreal. This along with dermititits,constant infections,dry mouth though this is the least etc.I have been tested for sjogrens as well and don't have it. I too am getting horrible headaches and pressure. Anyhow like you have the humidifier and now am working on my omega cause I have been on many meds that either have done nothing or worsend. I think you also have rsd? I am going to another pain specialist but the last said that it may be related to this but who knows. I am looking to get another mri of my brain as well. Let me know if you find any help and I will too.

Dealing with Sjogrens...
 

.
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!

My sleep doctor told me we must sleep on a regular schedule, to bed the same time, and up at the same time daily. When you go to bed early one night, then you probably wake early the next morning, then your day is off to a yawning fest.

I force myself to stay awake until 11 pm every night, and generally wake around 6. It's getting better for me, I was waking around 4:30. Taking naps, and sleeping erratically will cause fatigue. Sometimes though, you can hardly drag yourself around. It's a difficult process to change. After 6 months on CPAP, I am still trying to get "average".

I find the dryness isn't as bad this time of year. Winter, with heater fans going is very difficult for me. At work, we have forced air heat, and I have more dryness there, at home, we have hot water heat, with baseboard heater, not so bad here. BUT, now that the dryness is getting a little better, the seasonal allergies are kicking in.:confused:

Hi Cyclops,

I stumble on this post while looking for information about Sjorgren's.

It interests me because of your pulmonary involvement. My CT scan showed fibronodules in my lungs. I will see my pulmo about the result next week. Initially, my major problem was the neurological pain. Then, my shortness of breath that led me to the pulmonologist. While waiting for all my next appointments with the doctors, my breathing is getting heavier. Its funny how a new illness can make the current problem seems bearable. I still have my PN pain and it still bothers me but with the new lung issue which makes me always breathless even doing simple chores, it seems the PN pain seems tolerable.

The rheumy does not want to categorize me as with Sjorgren's because my tests are all negative.

I will appreciate your update.

Cyclelops hasn't posted in months, so she may not reply. Just thought you might want to know.

Thank you en bloc for letting me know.

I am having serious SOB. My husband borrowed a nice movie from Redbox and I just watched it halfway...

The Symbicort not helping me.

Thanks again.

Sounds like you need to call the doctor. Maybe they need to move your appt up.

My appt with pulmo is by monday/July 16. Its the rheumy that is still way far off - next month.

Thanks en bloc.