Question about Sjogrens

[jskidmore]

I am wondering if I might have Sjogrens. I went to a website specific to that disease, but you have to pay to get onto the message boards. I won't do that until I get an official diagnosis.

I have had dry eyes for over a year now - I've posted here about those before. I'm at a comfortable spot with my eyes for now. Off and on I get bouts of dry mouth. Usually only lasting about 2 - 3 days and then I am fine again. But I have had an extremely dry mouth for more than a week this time. My dentist thought I might have Sjogrens and/or Lupus especially since I already have another autoimmune disease. I was tested for Lupus about 9 - 10 months ago and the tests were negative.

I am going to see a doctor about this in about two weeks. In the meantime, I'm using Biotene mouthwash and spray, drinking lots of water (small sips), trying to relax and not obsess about this (hard to do). I do have one question that I would like to have answered now if anyone can help me. Is this a disease that flares and then symptoms disappear for a while? Or once you have it is it dry mouth (and other symptoms) all of the time?

Also, I just got braces on my top teeth about six weeks ago, the bottoms go on tomorrow. Could this somehow make dry mouth worse? I have not had any problems with the braces even with the dry mouth.

Thanks for any responses. I'm already so stressed out about this and will probably give myself a flare of my ulcerative colitis if I don't stop obsessing about it.

[regina]

I have the same issues...dry eye and dry mouth sometimes...I used to have nice breath..now it a lot of brushing to feel as good... they say because of the dry mouth..but I also tested negative. But what else could it be? I also have auto immune issues...but still coming up negative...weird.

also try chewing gum. when its really bad at night, for me that is the worse a sugar gree gum while sleeping helps me. I always have visions of someday waking up with gum in my hair ...but not yet. At least my tongue isnt sticking to the roof of my mouth!





QUOTE=jskidmore;51347]I am wondering if I might have Sjogrens. I went to a website specific to that disease, but you have to pay to get onto the message boards. I won't do that until I get an official diagnosis.

I have had dry eyes for over a year now - I've posted here about those before. I'm at a comfortable spot with my eyes for now. Off and on I get bouts of dry mouth. Usually only lasting about 2 - 3 days and then I am fine again. But I have had an extremely dry mouth for more than a week this time. My dentist thought I might have Sjogrens and/or Lupus especially since I already have another autoimmune disease. I was tested for Lupus about 9 - 10 months ago and the tests were negative.

I am going to see a doctor about this in about two weeks. In the meantime, I'm using Biotene mouthwash and spray, drinking lots of water (small sips), trying to relax and not obsess about this (hard to do). I do have one question that I would like to have answered now if anyone can help me. Is this a disease that flares and then symptoms disappear for a while? Or once you have it is it dry mouth (and other symptoms) all of the time?

Also, I just got braces on my top teeth about six weeks ago, the bottoms go on tomorrow. Could this somehow make dry mouth worse? I have not had any problems with the braces even with the dry mouth.

Thanks for any responses. I'm already so stressed out about this and will probably give myself a flare of my ulcerative colitis if I don't stop obsessing about it.[/QUOTE]

[jskidmore]

Don't think I can do the gum with braces. Right now I have spacers in the back and haven't even been able to suck on hard candy. That has helped in the past. Do your dry mouth symptoms come and go or is it constant? That is my main question right now.

[willwork4tears]

Sjogrens is a chronic/progressive disease

I have sjogrens.

I tested negative for ALL the autoimmune markers for every autoimmune disease. But I tested positive for Sjogrens with a salivary gland lip biopsy.

My dry eye and mouth are constant. However, the severity waxes and wanes. Sometimes my treatments are effective and the symptoms are quite mild, othertimes they are severe. I never feel as though my dry eye and mouth symptoms go away completely.


It could be that you are in the early stages of the disease. If the blood tests are negative I would definitely recommend a salivary gland biopsy if you want a definitive answer. There is a very high false negative rate (testing negative when you actually have the disease) for the Sjogrens SSA and SSB antibodies.

[calli66]

The forums at Sjogren's World are free and very good.

I have Sjogren's too. I don't have too much trouble with my mouth, but it affects my eyes and causes my blood count to be off.

I had flares (muscle pain mostly) at first, but not that often anymore. Sjogren's symptoms vary a lot from person to person--in which ones they have and how severe.

C

[Sabrina]

Sjogrens or not

This has been a frustrating issue for me. I too started with dry eyes and dry mouth last year. The dry mouth became so severe at times I got mouth sores. Then not so much. All my labs were negative so I was assured I didn't have it. Then I had to ask for the lip biopsy after doing my OWN research.. Gotta love Doctors sometimes. Lip biopsy was a painful healing process and the sample size was not enough cells so inconclusive however showed increased leucocytes (which I guess is evidence of Sjogrens)

Two very respected and well known rhematologists say I absolutely don't have it based on the lab work and one says I do. My PCP says.."Why does it matter. All you can do is treat the symptoms if you have it." I sure would like to know for sure but don't want to do another lip biopsy.

My dry eyes are back and periodic dry mouth after a year of no symptoms so who knows if that is a fluke or it is Sjogrens and I was just in remission. I take generic Salagen when the mouth issues flare. It really helps but doesn't help the eyes. Good luck!!!

[willwork4tears]

Your doctor that said it doesn't matter if you have a firm diagnosis, you treat the symptoms regardless is absolutely right.

Your doctor that said it doesn't matter if you know for sure if you have it or not is ignorant. (Hopefully it wasn't the same dr). The importance of knowing is that you can be aware/cognizant of the increased risk for lymphoma. People with sjogrens have a 40 times increased risk of developing lymphoma. The lifetime risk is about 1 in 10 for sjogrens patients.

So I agree with you that it always is nice and reassuring to have a firm diagnosis.

In the meantime, find a good ophthalmologist to treat the eye symptoms and a good dentist or oral pathologist to treat the mouth symptoms. Take the Salagen or Evoxac regularly. Too little saliva will indeed cause mouth sores and can increase your risk of developing multiple and/or severe dental cavities. Brush twice a day with a prescription high fluoride toothpaste. Floss DAILY. Use a good tongue scraper (to remove cavity-causing bacteria). Chew sugarless gum. Maintain METICULOUS dental hygiene.

As for your eyes. Baby them. I like high-dose cyclosporine, punctal plugs and nightly rice-baggy warm compresses.

Good luck!

[y-gwair]

I wouldn't get too hung up on diagnosis, and avoid doctors who do. Sjogren's isn't a single disease in itself, there are different criteria for it's diagnosis (symptoms, various antibodies, positive lip biopsy). Even when these have been excluded, you can still be positive for other inflammatory markers suggesting active autoimmune disease (I had a negative lip biopsy, but have ANAs, elevated IgG with hypergammaglobulinemia and eventually the diagnosis of Undifferentiated Connective Tissue Disease with Sicca syndrome); some people just have ideopathic Sicca syndrome, and yet have been shown to benefit from Sjogren's medications in clinical trials (my rheumatologist is happy for me to take plaquenil, which has helped).

Short periods of oral dryness may be not be too significant, they can be caused by many prescription medications, and also by stress. Long-term dryness is usually accompanied by particular patterns of decay along gum line or tooth edges. Oral dryness and soreness can also be due to the various kinds of anaemia (which tends to accompany autoimmune conditions), so have your levels of haemoglobin, ferritin and B12 checked. Mouth sores/ulcers/mucositis etc can also just be another flaring symptom of connective tissue disease. Hypothyroidism can also cause oral/ocular dryness, and often appears along with SjS and other connective tissue diseases.

[Polsefja]

One quick question, does sjogrens syndrome also cause night dryness?

[pecan121]

I have Sjogren's. My dry eye symptoms vary, but my mouth is always dry now.

Something else you might want to try is OraMoist dry mouth time released patches. They are supposed to last 2-3 hrs for daytime use and up to 5-6 hrs overnight. I prefer sugarless gum for day use. I use the patch at night and it does help. I no longer feel like I have to get up for a sip of water. It can be stuck on the roof of the mouth about half way back or placed in the cheek.

It was a little hard for me to get used to overnight and the taste is faintly like orange baby aspirin. It is sugar free and available over the counter at Walgreen's, but not Walmart.