Sjogren’s Syndrome – Introduce yourself and meet others

Sorry for all you deal with. And for the long post. Have alot to say as a first time poster. Will be more brief in the future. I've no breast cancer or Covid history. I'm newly diagnosed but with a long history of symptoms & some tidbits I can speak to, though I'm no doctor follow. Many systemic seronegative Sjogren's symptoms were brushed off before positive lip biopsy. Hydroxychloroquine caused GI & neuro side effects. It can help some RA & Lupus sufferers. Many report Plaquenil vs. generic has less side effects. Haven't tried it. GYN, sinus & skin issues existed in childhood, then suddenly was plagued by weird symptoms, picking up new ones each few years, in this order: migraine, dry eye, tongue pain & swell, thyroid, lymph, GI upper & lower issues, muscle weakness, fatigue, weight loss, scalp neuropathy, hair loss, stiff joints especially neck, chronic thyroid & lymph swell then, most recently & weirdly, no sweat. I asked for auto immune labs, Sjogren's specific ones once aware of that possibility. Was often dismissed with no follow up advice earlier on so started my own investigation. Average age at Sjogren's diagnosis is mid-age, but ONSET could be sooner. Children & teens have it & share diagnosis stories on The Sjogren's Foundation site. Hormones & the thyroid (Hashimoto esp.) play in & often precede Sjogren's. 1 in 30 men with Sjogren's have an extra X chromosome per some studies. Breast implants can cause trouble in autoimmune predisposed people mainly. Had mine 20 years, then new ones for 8, then finally explanted years ago. Migraine & muscle weakness improved, new GYN, GI, dryness, more thyroid, lymph & sweat lack grew. That said, Mom has RA, Lupus & Hashimoto without ever having any type implant (save for dentures needed by age 30, per undiagnosed Sjogren's maybe). And mine didn't rupture. Explant doc said "your implants were crunchy," referring to the shell that encapsulates them." Sjogren's! Well so is everything else, why not that!!! Nervous System dysfunction & Sjogren's go hand in hand too I understand. Some suspects are combo of genes, then infection or environmental toxins & subsequent harm to neurological pathways). I think so in my case the migraines were worst, lasted longest & early on. The antiviral drug you note may have helped your pre-Covid Sjogren's symptoms if a pre-existing viral infection was a precursor to/or caused the Sjogren's. Some researchers think Sjogren's is really an untreated systemic infection that worsens in time as it goes unchecked so long having ample opportunity to spreads. This would explain picking up new symptoms frequently, a hallmark in systemic Sjogren's. Some infections like in the brain or certain sinus cavities are hard to treat. Mast cells become involved in some non-allergic reactions if signaled, so can become a nuisance. Similar to the Paxlovid helping your autoimmune issues, had lifelong painful cystic acne cured 3 months on Accolate, an old Luekotriene blocker, as anti-rejection prevention for the implants. It's not RXd long term per risks for some. Scratch my head about the female to male 10:1 ratio. Might it be tampons??? Only thing I think of that's another truly different exposure. Remember the relation to toxic shock syndrome back in the day though never experienced that. Plastics of any type aren't great. Teeth straightening trays or braces, especially metal sorts (had both & dental implants before things started to get really bad. Could be infection per teeth moving or too many hands in the mouth. MALT lymphoma risk in Sjogren's is less frequent in women & in the seronegative I read. Get tested for it each 6 months is usually advised by most Drs. Wonder if seronegative patients retested are ever positive as the disease progresses. And if those with only dryness eventually develop systemic issues more so that it's thought. Believe stats are skewed...no one's rechecking. Wish I would have done another lab test before going for lip biopsy, may have avoided it & the numb lip a year later!!! Recently read comment suggesting the few antibodies tested for in Sjogren's could be merely helper antibodies too, not the main ones activated in that Disease, with more specific ones yet to be discovered. Would explain the 40% seronegative rate. Sjogren's is way under researched & treatments less helpful than many other less common autoimmune diseases. Retraining myself to remember it's a disease not syndrome anymore. Also that primary vs. secondary is irrelevant. There's near always more than 1 autoimmune condition, treatment doesn't always differ for primary vs. secondary & there's no sure way to tell which came first anyhow, since diagnosis lags years behind actual onset of symptoms. Still grateful to Mayo for diagnosing my Sjogren's. Maybe one day they'll cure it or at least find better treatments. Doing the tapestry genetic study. Lozenges & eye drops are great for the sicca, but that's my least issues. Gotta keep faith & keep telling our stories. Hope this helps someone meanwhile. Prayers for those out there enduring this!

Hi thank you for starting this thread. I don't know if I have sjorgens yet but if I don't I'd be shocked. I see a rheumatologist at the end of February. It was actually my sinus doctor that mentioned sjorgens to me last summer
I never even heard of it. I'm also seeing the rheumatologist for fibromyalga I'm pretty sure I have it it started lastnyear as well shortly after my gallbladder surgery and has just progressed anyway I'd love to talk to others. My sinus dr did do about five antibody sjorgens bloodwork which were normal. My throat though couldn't possibly get more dried out. Then shortly afterward few months ago my eye Dr diagnosed me with dry eyes. I think I have silent reflux too so my mouth/ throat is really a struggle. Thank you for listening.

Hi I'm new to the group. I was diagnosed 10 years ago. Also have fibromyalgia, rheumatoid arthritis, osteoarthritis, vertigo. Can't take pain meds due to stomach issues. Very difficult to manage. Any suggestions would be most welcome. Than you. Jacqueline 😊

Hi Cindylb, I have had Sjogrens since I was a teenager and now I am 79. I was so lucky to have met a dentist -30 yrs ago-who had experience with dry mouth etc. He said to be careful with toothpaste and mouthwash, as most have a drying agent! He told me to use the Biotene products- toothpaste, gel and spray. I have trouble taking pills as my throat is so dry so I spray my throat with the Biotene spray and then I don't choke!! I have had multiple surgeries- hip cataract- brain- and the anesthesiologists all have told me it's ok to spray my mouth with the Biotene spray before the surgery. Since I have the Sjogren's dry cough, the spray really helps. These are over the counter products and not very expensive. Oh, the gel helps get rid of mouth sores! I hope this helps.
Joan

Hi Cindylb, I have had Sjogrens since I was a teenager and now I am 79. I was so lucky to have met a dentist -30 yrs ago-who had experience with dry mouth etc. He said to be careful with toothpaste and mouthwash, as most have a drying agent! He told me to use the Biotene products- toothpaste, gel and spray. I have trouble taking pills as my throat is so dry so I spray my throat with the Biotene spray and then I don't choke!! I have had multiple surgeries- hip cataract- brain- and the anesthesiologists all have told me it's ok to spray my mouth with the Biotene spray before the surgery. Since I have the Sjogren's dry cough, the spray really helps. These are over the counter products and not very expensive. Oh, the gel helps get rid of mouth sores! I hope this helps.
Joan

I had all those symptoms for years and all my tests were normal. Not now....all my tests come back as Sjogren's. I pushed hard but couldn't get any medical help....but keep after it. The sooner you address each of the symptoms the better you can feel, although it's progressive I'm hoping to be aggressive with treatment and reverse what I can. If you don't feel 'normal' you're not 'normal'. Advocate (as exhausting as it is).

Hi, Effiejacques, I have just recently been diagnosed with Sjogren's Syndrome too but I know I had it for awhile. It is obvious that some of my symptoms that I attributed to my other autoimmune diseases were the Sjogren's. Anyway, I got relief from the hurt-all-over but NSAIDs- don't- help pain with Low Dose Naltrexone. It has stopped it 3 times when I had to go off of the LDN for other reasons. Takes about 2 days for the pain to stop. Take a look at the research (PubMed is a good place.) And then see if your Dr. can be talked into it.