Question about diagnosing sjogrens

[Brooke]

My doctor has completed blood tests for sjogrens that have come back negative. I know that I would need a lip biopsy to get a definitive diagnosis but my doctor is reluctant to do that. I have dry eyes but my mouth has started to feel more dry recently, especially upon awakening. However, I breathe through my mouth at night and the humidity has dropped with Fall coming.

My questions are--does the dry mouth occur all day long with sjogrens? Is it mostly the tongue that feels dry, or is it the throat too? Does it feel dry even with your mouth closed? Does it make you feel extra thirsty? I'm trying to differentiate dry mouth due to mouth breathing vs. sjogrens.

Thanks!

[ringo]

Dear Brooke,

I have completed very extensive tests for Sjogren's and youare right, the definitive test is the lip biopsy. Many Sjogren's sufferers have negative blood tests but positive biopsies.

In some the dryness hits the eyes the worst, in others the mouth is the bigger problem, and still others develop other complications, of which I am sure you are aware.

I just wanted to give you some hope- do not assume you have Sjogren's until you see the positive result of the biopsy.

From my experience, my mouth used to get dry at night, and of course the worst dryness is felt on the tongue, but if there is air-conditioning or heating in the bedroom it is simply unbearable. It involves teh entire mouth and throat.

Also this dryness tends to start out as mild, and then is supposed to worsen with the years. One thing that has kept salivary glands functional for longer time, is the drug Pilocarpine, according to clinical trials.

But again, until you see a definitive biopsy result that states you have Sjogren's try not to worry too much about it.

[howdryiam]

Hello

Brook - I went through this last fall at this time - My eyes have been dry for years, then my mouth started getting dry - So I went through 2 lip biopsies and countless blood tests - All came back negative -

I do take evoxac for my mouth which helps -

I would get the biopsy - but get it done from a qualified Ear nose and Throat specialist - I had one done at an Oral Surgeon and it came back inconclusive

Also plan on hiding for about 1 week while your lip heals

[Brooke]

Thanks for the replies. With sjogrens, does the dry mouth typically persist throughout the day and/or make you feel thirsty? For me the dry mouth is most noticeable in the morning but then seems to subside somewhat. I'm curious what those with sjogrens typically experience, as my doctor is reluctant to go forward with a lip biopsy at this point. Thanks!

[ringo]

Thanks for the replies. With sjogrens, does the dry mouth typically persist throughout the day and/or make you feel thirsty? For me the dry mouth is most noticeable in the morning but then seems to subside somewhat. I'm curious what those with sjogrens typically experience, as my doctor is reluctant to go forward with a lip biopsy at this point. Thanks!

Hi Brooke,

in my experience, yes the mouth feels dry during the day and thirsty (meaning you have to sip liquids often). It does feel worst in the morning though.

regarding the reluctance of your doctor to the the biopsy- i find that a little odd.

The doctors who did my biopsies (twice with different ones ), wanted to see the biopsy result first, and then do the blood tests, to determine whether it is a secondary Sjogren's (meaning there is some other autoimmune condition involved) and to see whether my Sjogren's involves auto antibodies in my bloodstream in addition to the salivary gland inflammation discovered by the biopsy.

The logic behind that is that some Sjogren's sufferers do not have autoantibodies, but all have salivary glands inflammation.

[calli66]

Brooke, my blood tests positive for Sjogren's antibodies, and I never had a lip biopsy. My main symptoms are dry eyes and digestive problems. Dry mouth has never been a problem, although I've been told it looks "a little dry." The only times I notice it are occasionally at night when I sleep with my mouth open.

Calli

[Lucy]

We are all different. My eyes were dry long before the mouth dryness. But, it came on strong. I wake up every hour or two for a sip of water and eye drops.

Even if a person has Sjogrens, a lip biopsy often fails to project this. Often a person is left with a permanently damaged lip. Almost three years after my lip biopsy, I'm left with a numb lower lip. After the lip biopsy, the rheumy ordering it said the test was "negative." The 4 other drs I have said the test was "positive." The test can be interpreted negative by one dr and positive by the next. You want confusion? My bloodwork was positive, so I didn't even need the lip biopsy. I would never have had it had I known all the details. Lucy

[nycdryeyegirl]

Hi,

I was diagnosed with Sjogren's Syndrome almost ten years ago (secondary to my Lupus disorder) through blood tests. A few years prior to testing positive for sjogren's, I had a lip biopsy, which came back negative. For the past few years, I tested positive for sjogren's everytime I have my bloodwork done

From my own personal experience with being diagnosed with sjogrens syndrome, I have found that it does not necessarily follow a textbook scenario (i.e., lip biopsy came negative, even though I had symptoms of sjogren's and then as it happened a few years later I tested positive thru blood work).

In sharing my personal experiences with you, I hope I've helped you in some way.