u/balkis11

Someone with negative antibodies but a positive biopsy and a very heavy burden of symptoms who is on treatment with IVIG or rituximab and is improving 🙏

I am writing in a desperate attempt to save my life. What I feel in my body has been absolutely debilitating for the past four years. Extreme and oppressive dryness in my eyes, nose, mouth, throat, esophagus, and stomach; constant indigestion and nausea; intense headaches accompanied by extreme brain fog; pressure throughout my face and in my salivary glands. I feel as if I am being strangled and burned from my mouth to my stomach (24/7). My skin burns; I can barely sweat. I cannot think; thinking hurts. I only feel physical and mental anguish. The depression is unbearable. ANA positive, Sjögren's antibodies negative, antimuscarinic M3 antibodies positive, pending lip biopsy to confirm the diagnosis. . I beg for a word of encouragement, someone who has had a similar extreme condition and has been able to recover their life...

Debilitating symptoms, sicca, gastroparesis, POST. Sjögren's antibodies negative, antimuscarinic M3 antibodies positive. Is anyone else in this situation who can share their experience? 🙏

I know it's not the usual question, but I'd like to know if anyone has been able to improve their dry mouth and eyes with rituximab or any other biologic?

Seronegative patients with a positive biopsy will be able to access the new medications for Sjögren's that are in the pipeline (ianalumab, dazodalibep, nipocalimab...).

I have been diagnosed with seronegative Sjögren's, dysautonomia, and possible small fiber neuropathy (SFN). The debilitating nature of my symptoms has also caused me to suffer from severe depression. It would be very encouraging to hear a positive story where immunoglobulin treatment helped with neurological and neuropsychiatric symptoms—such as severe depression, anxiety, and brain fog.🙏❤️‍🩹

My symptoms of dryness—affecting my eyes, nose, mouth, and throat, among many others—are absolutely debilitating. My quality of life and daily level of suffering are truly miserable. The only thing keeping me going day after day is the thought that something better might be on the horizon. In my search for hope, I’ve found firsthand accounts—having spoken personally with them—from women participating in trials for new medications (ianalumab, dazodalibep, etc.) who have seen substantial improvement in their symptoms. One woman, who had suffered from extreme dry mouth for nearly 30 years—even with a calcified parotid gland—regained 80% of her saliva production while taking ianalumab; she jokingly told me she now has to be careful not to spit while speaking, as she wasn't used to having saliva to swallow. Another lady, who suffered from severe dry eyes, keratitis, and constant pain, tells me she now barely needs eye drops. I hear similar stories from other people I’m in contact with. My goal with this post is not only to offer some encouragement to all of you fighting this arduous battle but also to highlight the fact that the worst medical prognoses don't always come true; science is constantly refining its knowledge and shifting its narrative, and ultimately, the body has the final say. What do you think?

Gastroparesis, LPR, extreme dryness in the eyes, nose, mouth, throat, and esophagus, head pressure, and extreme brain fog. It feels as though I am being strangled from my throat down to my stomach 24/7. Unbearable anguish and depression. Four years in hell. I am trying to fight for immunoglobulin treatment, as some people with similar conditions have managed to improve. Could anyone with similar symptoms who has improved offer me some encouragement?

I know it’s not the usual case, but I’d love to know if those of you undergoing immunoglobulin treatment for dysautonomia or neuropathies have managed to improve your dry symptoms to any extent.🙏

Could someone participating in the dazodalibep trial please share their experience?🙏

I would love to hear a positive story about improvement in severe digestive symptoms (gastroparesis, LPR, swallowing issues, permanent globus sensations) with immunoglobulins.🙏

Has anyone in perimenopause tried hormone replacement therapy and experienced any improvement in their Sjogren's symptoms?

I would love to hear from someone participating in clinical trials of one of the new drugs (ianalumab, nipocalimab, dazodalibep, telitacicept) who has seen an improvement in their quality of life. We need hope.

I would love to hear from those who were able to improve severe dysautonomic and digestive symptoms (gastroparesis, reflux) with biological treatments or immunoglobulins.

It would be wonderful to hear today some testimony from someone participating in one of the trials of the new medications for Sjogren's syndrome who has significantly improved their dry symptoms🙏✨