Progression of sjogrens

I was wondering how fast sjogrens takes over your salivary glands. I now each person is different, but I never had dry mouth of eyes until this year 1/5/14.It is really bad now I have no saliva at all hardly, every week that goes by is less. I had a blood test done and it should up neg. for sjogrens

This is such an excellent example of why we love and need our support online sites. I will take all this info and send it to my GP for her to have ready for me when I come in next time. I love having support from complete strangers who soooooooooooo understand where I am at physical and emotionally. I have PsA, Sjorgrens and neuropathy in both feet and beginning in both my hands. I have been diagnosed for over 2 years and we're still playing with meds and treatment plans. I am greatly blessed to have a fabulous GP who sent me for test based solely on how rotten I had been feeling. Sjorgens five months later and neuropathy a year later. She introduced me to the leading team of Rhemy's in WA and they have been treating aggressively ever since. Whatever new information I get I share with all of them. So keep the news flowing. Thank you so much for making this site available!!!!! Michelle

Kaz said:

Blood tests are only positive in approx. 40% of cases. That is just an average between the two SSA and SSB tests. A positive ANA occurs between approx. 50-90% of cases. Sometimes the SSA and SSB take years before blood tests appear positive. Sometimes they never do...

You should see an opthamologist and have a Schirmers test done, plus also ask your GP to run a salivary production test. These will help build a clearer picture. If these are positive then you can opt to have a lip biopsy to try and gain a firm diagnosis. Lip biopsies are not always accurate though and can leave you with numbness in the area. But definitely worthwhile discussing with your doctor as if positive for Schirmers and salivary production indicating active disease, a lip biopsy may just give you your diagnosis.

You can have periods of flare ups and then things settle again. Then after time permanent damage begins to occur. Each person is similar yet different, so one rule does not fit all in regards to progression. My advice is ask your GP for a pathology referral to have your ANA, SSA, SSB, ESR and CBC on hand so that when you are going through a very bad attack of this dryness you can go and have bloods taken while it is active.

However, please also do consider looking into your history of whether you have recently started any new medications within the last few months or even any over the counter medications, or herbal preparations. As many medications can actually cause issues with the eyes and mouth. If you have, you can state the name of the medication/medications and I can let you know whether this is a known side effect.

Other factors that can cause issues with dry eyes and mouth are menopause, so if you are nearing menopause that can also cause issues. So please ask your GP to run hormone profile tests on you.

I am assuming your GP also ran ANA test as well as the SSA and SSB? Also blood tests for IgG?

This is the current diagnostic criteria for Sjogrens.

Revised International Classification Criteria for Sjögren Syndrome

  1. Ocular symptoms (at least one of the following symptoms):

    Daily, persistent, troublesome dry eyes for more than three months

    Recurrent sensation of sand or gravel in the eyes

    Use of tear substitutes more than three times per day

  2. Oral symptoms (at least one of the following symptoms):

    Daily feeling of dry mouth for more than three months

    Recurrent or persistently swollen salivary glands as an adult

    Need to drink liquids frequently to aid in swallowing dry food

  3. Ocular signs (positive results from at least one of the following tests):

    Schirmer test

    Rose bengal test or other ocular dye test

  4. Histopathology (positive biopsy of a salivary gland)

  5. Salivary gland involvement (positive results from at least one of the following tests):

    Unstimulated whole salivary flow collection (less than 1.5 mL in 15 minutes)

    Parotid sialography showing the presence of diffuse sialectasia

    Salivary scintigraphy showing delayed uptake, reduced concentration, and delayed excretion of tracer

  6. Presence of antibodies to anti-SS-A and anti-SS-B antigens

note: The classification requires four of the six items, one of which must be a positive minor salivary gland biopsy or a positive antibody test, or the presence of three of the four objective items (items 3, 4, 5, and 6).

Adapted with permission from Vitali C, Bombadieri S, Jonsson S, et al., for the European Study Group on Classification Criteria for Sjögren’s Syndrome. Classification criteria for Sjögren’s syndrome: a revised version of the European criteria proposed by the American-European Consensus Group. Ann Rheum Dis. 2002;61(6):557.

Hey nana, we sound like sisters! Same list of ills, and lots of grand kids to keep us running in circles and laughing!

My Sjogren’s symptoms started a few years ago but in the last few months I have quickly deteriorated

Ben I think my Sjogren's got really bad the last 5 years. It's even considered advanced. My entire digestive tract & pancreas do not function sufficiently. I have all neg blood labs for Sj too. I have had no saliva for the last 4 years or so. This year I was given a med. call evoxac & it has helped me produce some saliva. Sometimes I never feel like I can drink enough & still feel so dry & thirsty. Hang in there. You are not alone & it is very frustrating at times. A big hug & a smile for you. Hope you feel better. God bless you!

P.S. Eyes are severely dry, gritty, & burn. It's worse since everything is getting greener outside. My eyes always let me know they're there too. Uncomfortable daily, they just want so much of my attention & they win! It helps to have a sense of humor, if you can. Make sure you take care of yourself & have some happy times in spite of the Sj. Try to stay positive! Restasis, Eyelid spray, Lubricant eye gel, Lubricant eye drops, eye ointment, Oh My!

Hi It's Me!

You're right, gotta have some fun! When you mention eye gel, is this the petroleum based product, like vaseline? What kinds of eyelid spray do use? I've never heard of that before!

Yes, I have allergy problems this time of year and again in the fall when mold is very high.

Sounds like you've been through the ringer too, hope it gets easier, and the meds work better until our Goddess here strongarms them into getting this stem cell and gene therapy research taking place in China, underway here!

Wishing you well,