sjorgen testing

[Zelda5]

Hi, I have a question for those diagnosed with sjorgens. What tests do they use to diagnose you? My eyes have been dry for some time. I have Hashimotos and I kinda always blamed it on that, but I think dry eye is more related to graves. I've always had trouble with sunlight sensitivity and Rosacea. I recently had my eyes checked and the optometrist said my eyes were dry but she felt my glands were blocked and that it didn't look like allergies. The eye examiner before her said she felt it was rosacea of the eye. Even though my .face wasn't flared up at the time. Anyway I'm wondering if clogged eye ducts is a sign of sjorgens who should I see to get the testing started The opthmalogist at the eye clinic that I go to or go see or a rheumatologist? I also don't have dry mouth but a I kinda havea dry nose,muscle aches and weird skin rashes that itch like crazy.

Any help is appreciated,

Thanks!

[gwillistexas]

I’m negative for Sjogrens but my rheumatologist did a Sjogrens Syndrome-BExtractable Nuclear AB. I just looked back at some of my labs.

[gwillistexas in reply to gwillistexas]

Sorry…B- Extractable

[Zelda5 in reply to gwillistexas]

Ok, thanks for the info. I'll look that up.😊

[Widdy99]

Sjogrens is diagnosed with blood tests but up to 40% of sufferers are seronegative. Diagnosis then requires certain criteria to be met which includes a positive lip biopsy plus symptoms, positive Schirmer amongst other things.

[Zelda5 in reply to Widdy99]

Now I get why things take so long to get diagnosed. Especially if one test is inconclusive or doesn't quite meet criteria. Then you as a patient have to push for more testing to get the whole pic.

[Nellies47]

Hi Sjogren's can be difficult to diagnosis. I had similar symptoms to you for a few yrs with ear and jaw pain. I see an ent consultant for chronic sinusitis and rheumatologist for autoimmune inflammatory arthritis. Both feel I have Sjogren's, however, I did have a lip biopsy last yr and it was in conclusive. It showed atrophy but not enough inflammatory cells to diagnosis. My rheumatologist feels that the Sjogren's flare was over by the time I had the biopsy. I also have strange rashes over past 6months.

Anyway rheumatologist says the treatment for autoimmune inflammatory arthritis is the same for Sjogren's. There is also bloods to test for sjogren's, mine were neg but apparently that doesn't mean you don't have it. Hope this helps.

Nelly

[Zelda5 in reply to Nellies47]

Yeah, actually it does. Thank you!

[gillrich]

I have sjogrens but never been tested my pbc consultant said my dry eyes dry mouth was sjogrens. So I have numerous eye drops and lubricants also have sprays for mouth ans special tablets to increase saliva. I have had blocked saliva glands behind cear and cheek which need medication and sent to have a scan on those blocked glands. Everyone says sjogrens .

[Candy12 in reply to gillrich]

Sorry to jump in Gillrich, would you mind telling me the name of your tablets? Do they work.

[Candy12]

I had blood tests and told I don’t have primary sjogrens , but I have what they called secondary sjogrens related to having PBC and other auto immune issues. Apparently, I get the dryness but not the other symptoms of sjogens whatever they may be. I’am not given anything for it now I used to get lozenges on scrip, but I’m now told to suck sweets or buy a mouth spray and get OTC eye drops.

[gillrich in reply to Candy12]

Pilacarpine from my pbc consultant but I still have to use lots of all I said before . 2ndary sjogrens hope this helps x

[Candy12 in reply to gillrich]

Thank you, I can discuss this possibility with my consultant.

[Zelda5 in reply to Candy12]

How do they determine if it's secondary or primary? I also notice my fingers go white under running water. Not even really cold. It done that before a lil but it's really noticeable now. I had chalked it up to bp meds but my BP has been normal lately and I quit taking them.

[Candy12]

Sorry I don’t know the doctor was so dismissive of it that I never asked. I just thought it was secondary because I had pbc. And it would be primary if I only had sjogrens. All I know is the test was negative and I don’t get prescribed anything for it. I have heard some call it seronegative sjogrens as well.

Have you been tested for Raynards syndrome that can affect the fingers. Hope you can get it sorted out.

[Zelda5 in reply to Candy12]

No, a endocrine Dr. mentioned it once in passing but did no testing. Then another time she commented that my fingers were warm. So, I figured that was probably not an issue It's not a consistent thing either. I did show my husband my fingers after washing them to get his opinion the other day. It kind of freaked him out a lil. So I know it's just not in my head.

[Candy12]

I would get it looked at , at my GP you can’t get appointments but we get to send our symptoms and a photo , maybe take a photo when it’s like it , to show the GP.

[Zelda5]

Yeah Ive asked my dr. to send me a referral to a Rheumy

[Kels1974 in reply to Zelda5]

Have you seen a rheumatologist yet? I was diagnosed with sjogrens by having a look biopsy,my blood tests are negative.

[Zelda5 in reply to Kels1974]

I did get and see the rheumatologist and the tests came back negative. He wanted to see me again in 6 mos. So, you were diagnosed by a lip biopsy? Im assuming look was a typo.