Sjogren’s Syndrome – Introduce yourself and meet others

Hi, I’m one of the AIED people. I’m a little hesitant to post, it seems like AIED is a gnat compared to the rest of your issues! No wonder you’re struggling with anxiety. AIED, at least as I experienced it, limits itself to your ears. I never had pain, or dizziness (others apparently do). Tinnitus was tempora. I am now deaf but have cochleAr implants in both ears. Not perfect, but I mostly get along fine.
It was a long and crummy trip to get to this point, tho. The beginnings of grappling with it all, and especially dealing wit attempts to cure it via steroids and methotrexate l, were horrible.
How can I help?

Yes of course.........always happy to repay the kindness and support I found on Mayo Connect. It's just too bad I'm in several of these support groups, ha ha.....so many illnesses, so little time. Sigh.

Thank you! Although, what you detail is what I've read so far and it sounds...well...horrible. Do you also have an auto immune condition? My AIED is due to the autoimmune Sjogrens Syndrome (which accounts for my other 'issues'). How well do the implants work for hearing? I'm particularly upset about losing my hearing because......my whole life has been in music, promoting it, playing it and teaching it. My daughter joked I'll be like Beethoven but frankly....I'm just not that smart or talented. I don't want to lose that very important and emotional part of my existence. I'm sorry for your experience. The drug therapy doesn't sound pleasant. I'm not sure what my treatment will be at this point but I do have headaches, dizziness and tinnitus (off the charts). I am seeing my ENT again to rule out any/all other conditions that might also be contributing but the AIED is the biggie. You're so very nice to share with me and I appreciate the support. I guess I'd like to know how long the process was for your condition, if the steroids helped or the methotrexate and how well the implants work to help you hear? Hugs and big thanks.

First, implants are not natural hearing. I think they do very well for speech, and there’s a whole thread on HearingTracker of CI people who play music. There are also researchers - you can look on th HLAA website and find reports on just this topic from the convention in June of this year. My take is that 1. Your hearing will change and2. It’s not hopeless. But then , isn’t that better than what you’re facing now?
Losing your hearing is a huge loss, and most people grieve it deeply. So maybe be compassionate with yourself. It isn’t fun, your heart will break. But you will be able to talk to your loved ones and be ok at work and deal with the outside world. Not perfect, but enough
On tinnitus, I never had nightmare bouts of it, but once my CIs were activated, it just kind of faded away. I theorized that the CIs took up all the bandwidth on my auditory nerve . Makes my ENT roll his eyes, but neither of us is complaining
One more thing. My story took years. Summing it up like I did makes it sound smooth and easy, but it actually carried on for 20 odd years. Keep on breathing and putting one foot in front of the other. The road gets better

Hello
I have also gone thru the Breast Cancer treatment and have not been able to get back to my pre cancer self. I had a bilateral mastectomy then implants. I have dryness chronic fatigue and joint pain. I tested positive for ANA and My rheumatologist tested me for Sjogrens and I had a focus score of 1 from the lip biopsy. Here’s the unusual thing. When I had Covid I was prescribed Paxlovid. My symptoms greatly improved while I was taking that medicine. I am trying to find the connection.

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 😊

Thank you so much for your reply. Your first hand experience has helped me. I am still in the early stages of figuring this out, so I will be back with more questions. Big hugs and thanks to you.

That's very interesting.......I'll assist you in your 'research' on Paxlovid, ha ha.
I have never tested positive for Covid BUT.....I recently had a terrible viral illness and tested negative for everything, but then I wonder if timing is a problem with testing for Covid? I had similar Covid symptoms to my nurse but never had a positive test (all these years, knock on wood) but Covid can cause some of the symptoms I'm experiencing. It's just a jumble of things with Auto Immune. I was just diagnosed with Sjogren's but have been trying to get the diagnosis for many years (as I knew something was wrong). Thank you for your reply. I'm trying to get to the best answers and situation possible......your help and insight is greatly appreciated.

I hope you find relief. I was just diagnosed a month ago with Sjogren's Syndrome....but I've suspected it for some time. If I hear of anything that might help you, I'll certainly pass it along. Many auto immune conditions predominately affect women and I'm afraid that years of only male researchers and bias have impacted the understanding of these diseases. There are lots of us now and hopefully the research and treatments will increase now that more women scientists are in the field.

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!