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DiscussionSjogren’s Syndrome – Introduce yourself and meet others
Autoimmune Diseases | Last Active: Dec 9 10:31am | Replies (661)Comment receiving replies
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!
Replies to "Sorry for all you deal with. And for the long post. Have alot to say as..."
Thank you for your post. Much to think about here. We're on our own a bit but we all need to keep posting, keep asking the doctors and keep the faith that our contribution will help with answers and effective treatments for Sjogrens.