Question for Sjögren's Sufferers

[willwork4tears]

Hi, I'm an immunologist and also suffer from Dry Eye due to Sjogren's. I have almost every Sjogren's sign/symptom in the books, but I've never tested positive for a single autoimmune antibody. The problem with these tests is that they're not very sensitive/specific. It's completely possible to have an autoimmune disorder and not have the positive blood tests. Farmgirl is right about the lip biopsy being the gold standard. It is invasive; I also have permanent numbness in a small spot on my lower lip. I know other people that have had biopsies with no numbness. I think it depends on how invasive the doctor is; mine was very invasive and took more salivary glands than was necessary. My appearance is totally normal. Also, regardless of a definitive diganosis of Sjogren's or any definitive diagnosis, for that matter, it is very important to treat the dry mouth and eyes. Muscarinic agonists (pilocarpine/Evoxac) are a great way to stimulate salivary flow. It is very important to restore salivary flow as the longer the dry mouth goes untreated the more atrophied the remaining salivary tissue will become; in essence: if you don't use it, you lose it. The drugs come with side effects, but not treating the dry mouth can come with it's own set of serious problems (worsening dryness, salivary stones, increased dental caries, fungal infections, gingivitis, etc). Also, start using prescription 1.1% sodium fluoride toothpaste (Prevadent) to strengthen your enamel and avoid acidic beverages or rinse with a dilute baking soda/water rinse after drinking to rinse out the acidity (bad bad bad for teeth that live in dry mouths!!!).

Also, I have keratosis pilaris, too. The only thing that helps me get rid of the bumps is Amlactin lotion; it has lactic acid in it and helps rid the pores of the built up keratin. It stinks and it's expensive, but use it once or twice a day regularly and it really works! Available OTC in skin section of pharmacies.

[willwork4tears]

very important information for dry mouth!

11.06.23 SSSG Dr. Zunt dry mouth notes.pdf
Coenzyme Q10 salivary flow.pdf

In addition to my advice a few minutes ago, see these attachments. One is a document that my oral pathologist gives all her patients on management of dry mouth; she also recently handed it out at a local Sjogren's support group. Her newest handout (not this one) also includes Coenzyme Q10 (100 mg once a day) supplementation as a treatment for dry mouth. See the attached research article for more information and search for my screenname and read my recent thread on CoQ10 and dry mouth. Very very helpful supplement for me. Good luck!

[spmcc]

Hey Tankie,

In willwork4tear's first pdf above, in the section on OTC lubricants, there is something called OraMoist Dry Mouth Disc. I don't remember if I bought it in the States or here, but it's something to try (immediately, without doctor's appointment) for nightime mouth dryness.

Let me know if you can't find it here. I'll see if I can get you some.

Cheers,
Sheila

[Tankie]

Thank you thank you thank you! The information given to me in these posts could potentially save me years of trying to figure it all out on my own!

I will need some time to read through all this stuff and understand what's going on, but I'll definitely do it soon, and I'll definitely see if I can get my hands on OraMoist Dry Mouth Disc.

[spmcc]

One additional pubmed abstract that I found interesting:

Sleep disordered breathing in patients with primary Sjögren's syndrome: A group controlled study (July 2012) http://www.ncbi.nlm.nih.gov/pubmed/22841036

[shanku]

If you indeed consider getting a minor salivary gland biopsy, my advise is to get it done at a top hospital with people who understand it; would recommend:

International SICCA Registry sites:
http://sicca.ucsf.edu/intl-usa.html

NIH-NIDCR Sjögren’s Syndrome Clinic
http://www.nidcr.nih.gov/Research/NI...grensSyndrome/

Johns Hopkins Sjögren's Syndrome Center
http://www.hopkinsmedicine.org/rheum...ns-center.html

First 2 above will not cost you anything, provides a diagnosis but have to incur travel expenses and they don't provide any ongoing treatment; 3rd one is supposed to provide diagnosis and treatment (mostly local management of symptoms, nothing to help stop progress of the disease), but have not tried it yet.

Apart from just lip biopsy, they evaluate you comprehensively via several other lab tests, signs/symptoms etc.

Good Luck!

[LiliS]

There are Sogren patients with negative blood tests for auto antibodies.Sogren disease can be primary or secondary ,linked to another autoimune disease ...you should find a good rhumatologist in order to check everything,,,,it,s more complicqted as you think......but make sure you did the right tests( ANA,reumatoid Factor,Anti Ro ,Anti LA,SCL 27 ,Anti - thyroid antibodies,etc) Don,t take medication ,especially Evoxac or Salagen without knowing your diagnose first!