Sjogren’s Syndrome – Introduce yourself and meet others

I’ve attached new ICD-10 billing codes for Sjogren's which are now in effect. These codes clearly define the systemic nature of Sjogren's. These were developed by the Sjogren’s Foundation and will help educate providers that don’t recognize all of the many symptoms that can manifest in Sjogren’s patients.

Hello i can understand what your going through. I also have Sjogren plus R.A..Im in pain a lot..plus im a Amputee b/k. Pain can go away when you think about something else

@athenalee This will be so helpful to members!!!! Thank you!

Hi there. I was in your same boat. Dry Eyes, positive ANA plus some hearing loss so they did a lip biopsy and it is negative for Sjogrens but the glands they removed are inflamed so something is going on. I did conscious sedation over general anesthesia and after a few days of canker sore pain I healed up real quick over a weeks time. Next week I go back and find out what the pathology report of "mild, chronic interstitial inflamation of the glands means. I have no lymphoid aggregates to suggest Sjogrens just a bunch of mature plasma cells....If you or anyone knows I sure would like your feedback. I have fibromyalgia plus joint pain and peripheral neuropathy.

I also have RA and Sjogrens. Do you mind sharing how you treat the Sjogrens mine is driving me crazy.

Hi everyone, I was diagnosed with Sjogrens over 30 years ago. My rheumy sometimes runs blood tests- SSA & SSB. A few times they are negative for Sjogrens. He said that happens a lot and most docs treat the symptoms. I have a lot of pain from Sjogrens and severe fibromyalgia. On the positive side, I am 77 and have had Sjogrens symptoms since I was a teenager. So it does impact your life but you can still live with it. One thing that I recommend is if you get a flare, try to give into it as usually it will go away faster. Also, try to have a positive attitude. I use THC on my joints. I use a q-tip to put it on and it really helps. CBD might work too. I use the Biotene products for dry mouth. My dentist told me that most toothpastes have a drying agent in them but biotene products don't. I use the gel for mouth sores and the spray for dry throat so I can take my pills. I am immune compromised and have AFIB plus severe osteoarthritis and a brain tumor, so I can't take any of the usual meds. So I try natural or over the counter meds like Systane ultra drops and Genteal for severe dry eye gel. I hope this helps. Joan

I commend you for your strength and perseverence. I have not been diagnosed with Sjogrens yet but take Restasis. It is very expensive and would prefer to take Systane. Does Systane help you dry eye alot? Thanks, Lynnie

Did you get a lip biopsy as well to test for Sjogrens?

Welcome SoberKat! May I ask what led to your needing amputation below the knee?

What help distracts you from pain?

I have Sjögrens as well as RA. Diagnosed in December 2020. My blood tests were negative for antibodies for both. I had been tested before by my internist, but since I was antibody negative, I was told I didn't have RA. If it wasn't for my eye doctor (treating for Dry Eye and dry mouth) questioning for Sjögrens, I would have never known. He referred me to a rheumatologist. I went to Mayo clinic and was diagnosed by MRI, x-rays and salivary gland scan. Blood testing still showed no antibodies. The rheumatologist said I was considered seronegative for RA well as Sjögrens. I would be interested in the statistics for number of RA patients who are seronegative. I am on methotrexate and Humira but am being switched to Enbrel in place of the Humira.