Anyone out there with dry eyes and dry mouth only

[baddabingtim]

I am in the process of getting tested for sjogrens - but I only have dry eyes and dry mouth - no arthritis, joint pain or fatigue

Just curious if there are others out there with just dry eyes and dry mouth only...


Thanks

[calli66]

I have Sjogren's and one of my main symptoms is dry eyes. My mouth isn't very dry, and only bothers me at night. I have "no arthritis, joint pain or fatigue," either. Well, not to speak of. I'm 59, and so there's always a bit of age-related pain or fatigue. I don't think it's the Sjogren's.

My other main symptom (big time) is digestive sensitivity. I think this is because of the scarcity of moisture in the digestive tract. I tend to have bloating, constipation, food intolerance, and poor nutrient absorption if I don't maintain dietary discipline.

I have the SjS antibodies, run low in white blood cells and platelets, have low Vitamin D, osteopenia, and have to take thyroid meds because of the different auto-antibodies I have. (Be sure to be tested for Vitamin D deficiency, commonly found with SjS).

So yeah, it's possible to have Sjogren's without all those symptoms. And it's also possible to have all those symptoms and more and not test positive for Sjogren's. The disease is diagnosed usually by the process of elimination (blood tests, etc) and by symptoms. I've read that the average time from first symptoms to diagnosis is 5 years, and sometimes longer, because it's sometimes hard to make a definitive diagnosis.

Calli

[Lucy]

Tim, you're between a rock and a hard place. It's tough with no diagnosis as many on the sjogrens forum tell so often. SS is hard to diagnose. I, apparently had it for years (most do) before my dx one and one-half years ago. If you have a dx, it's easier to get treatment. However, with just dry eyes and dry mouth, treatment is limited. I hope things work out well for you.

I do have the joint problems (one knee implant) and lots of joint, muscle problems. Like Calli, I'm an "older woman" and some could be blamed on that. After my treatment for Sjogrens started, much of the joint, muscle pain etc. got a lot better. Lucy

[NYer]

Tim, are you on any medications? In particular, are you on any medications for GERD, for example Nexium, Prilosec, Prevacid, Zantac, etc.? If so, these drugs cause dry eyes and dry mouth and I know people who have been to their doctors concerned about the dry eyes and mouth, thinking that they had Sjogren and the doctor never considered asking them about those meds. When I mentioned it, they went off of the Nexium and VOILA! Their dry eyes and mouth went away. If that is the case, there are better and natural ways to deal with GERD and I'll be happy to tell you how I've dealt with it, if that's something you're interested in.

I hope this helps!

[jenny2008]

Tim,

I have only dry eyes and mouth--but I have Sjogrens.. No other symptoms at all-I take the usual protocol: restasis, warm compresses and massage and exovac for dry mouth ( which works great!)

[baddabingtim]

Good to know

My ENT was supposed to write a rx for exovac - guess he forgot - how long does it last - is exovac better than salagen ?

Well I will be back for a second lip biopsy friday - first one was inconclusive and I really want to know one way or another,,,

[jenny2008]

Hey,
I never tried Salagan but I do know that Evoxac has less side effects and works just as well (this is what i was told my doctor).. the only side effects i get is a little warm after taking it-for about an hour and then my body temperature goes back to normal .. nothing else out of the ordinary.. i love that i don't have to depend upon gum all day and feel back to 'normal'.. of course at night my mouth gets dry and i wake up in the morning w/a dry mouth but i take 3 x throughout the day and it works wonderfully!

good luck.keep me posted.

[baddabingtim]

2nd lip biopsy done

Well yesterday I had my second lip biopsy - different doctor - different method - different pain and swelling

The first time an Oral Surgeon performed it on the left side of my lip - more at the top of lip - then put stiches in - lip turned blue and stiches were aggravating for a week

This time the ENT did it and he went well inside my lower lip and then cautorized it - man when I got home I needed some vicodin - today my lip is swollen but not painful

Get results Wed - Hope it is neg - my blood test was negative for sjorgrens

[calli66]

Wow! Sorry to hear you have been skewered by the doctor. Hope this biopsy heals with no problem.

Let us know the results.

C

[hkgcomet]

I only have dry eye, but no dry mouth. ~_~

If you have both dry, but nothing find in any medical test and haven't taking any drugs, I suggest you try to find a "good chinese doctor"...it may be something health problem. But it may need times.

I don't know how many places in US/UK have chinese doctor

[baddabingtim]

Results

Negative for sjogrens after 2 lip biopsies and blood test - but mouth is still a little dry - I have eliminated all vitamins - only thing I take is 1 mg klonopin at bedtime (for sleep and teeth grinding - I do wear mouth guard)

But since I have been on the Klonopin for 2 yrs - I do not think this is causing the dryness - but I am going to start weaning off of it slowly

[calli66]

I guess it's still possible to have Sjogren's after all that---sneaky syndrome that it is.

I really doubt they would get a positive biopsy on my salivary glands---my mouth just isn't that dry. I have the positive anti-bodies and positive ANA and weird blood count, but not the joint pain.

But maybe it isn't Sjogren's and that would be good! Maybe you'll get better soon. And it's a hopeful sign that you don't have the joint pain and fatigue.

Calli

[NYer]

Tim,
Glad to hear you're negative for Sjogren's. With the dry mouth, are you thirsty a lot? Do you urinate a lot? If so, have you been tested for diabetes? (Easy test...fasting blood glucose test.)
-NYer

[Dry as a Desert]

Try getting the thyroid checked. That is critical. The dry eye/dry mouth symptom saved my life and helped the doctors to detect my thyroid cancer early. Believe me, dry eye/dry mouth does not automatically equal Sjogren's Syndrome. I thought I had that too but when all my tests came back negative, that's when my doctors started checking my thyroid. Mind you, I was a 115 lbs with a barely functioning thyroid full of tumors. That's unheard of. Usually if your thyroid doesn't work, you put on a lot of weight. I'm one of those rare cases that didn't put on any weight. Please check your thyroid if you have these symptoms. I wish someone would have told me and I wouldn't have wasted a year trying to track the source of my dry eye/dry mouth.

[baddabingtim]

thyroid

looked at http://thyroid.about.com/cs/basics_s.../10signs_2.htm

Nothing there matches anything I have - I did have bloodwork and thyroid tested - everything was normal

As for diabetes - no thirst or frequent urination unless I drink 4 quarts water