Sjogren’s Syndrome – Introduce yourself and meet others

Hello.....

I am not new to Connect, as I'm a breast cancer survivor and Connect was a lifesaver for me during my cancer journey. Now I have been diagnosed with Sjogren's Syndrome. It took me over 5 years to get this diagnosis but now realize that I probably had Sjogren's for much longer. It's nice to have a firm diagnosis (but unfortunate to have this at all, of course). My present concern is: Auto Immune Inner Ear Disease...AIED. I'm losing my hearing, have tinnitus, ear fullness and pain and dizziness and lots of anxiety (which makes it all worse I'm sure). Anyone else experience this? Would love to share. Also, since I'm new to Sjogrens would love to share with others on treatments, symptom management, etc. It can be so different for everyone.
My Sjogren's was first detected by an Opthamologist!! I started having trouble with my right eye 2 years ago and 8 opthamologists later, one decided it was systemic and did blood work and an eye biopsy (that was fun!). From there, with a positive ANA test I finally got to a Rheumatologist who got me a firm diagnosis. At this point I have dry eyes, lymphoid hyperplasia of my right eye, dry mouth, swallowing difficulty (which I have had for years and done lots of tests and was told nothing was wrong, except not being able to swallow, ha ha), dry skin, dry cough (getting a CT Lung scan shortly). I have started Pilocarpine and tolerate it pretty well (sweating and chills just after I take the pill). I'm afraid the ear problem will mean prednisone or other drugs and I'm a very bad 'drug taker', I get all the nasty side effects but am willing to try to save my hearing. I have had an MRI/MRA of my brain (I have a brain, all normal so far), have been using Restassis Eye drops for 30 years, OTC eye drops, nasal rinses, lots of lotion, have had a swallow test and other Ear Nose Throat tests and will have more later this week. All was normal a couple years ago, we'll see. I'm grateful to have Medicare now so I can afford this. Cost was stopping me getting this work up done earlier. I'm looking for any/all support. Doctors have limited time and just send you out the door with pills....so these groups are my lifeline. Thank you for the opportunity to share. I will repay your kindness whenever I can.

Oh wait, I have more........sadly........in addition to all the above. I have vaginal dryness and I'm unable to use antibiotics at all now because (well, I'm allergic to all but one class) and they cause immediate vaginal yeast and oral thrush. I'm using Estradiol Cream (relatively safe for a breast cancer survivor with estrogen positive cancer) and Replens. It's a constant battle not to get yeast infections where I have to use Diflucan, which works but makes my hair fall out (sigh). Also, I see that woman, especially of a certain post menopausal age get Sjogren's more often (?)....I'm wondering if it all comes back to hormones.....because I think my problems throughout my life all stem back to unregulated hormones (totally unscientific)....does anyone else have this hypothesis?

@cindylb. I’m so glad that Connect was helpful, especially when you needed it. Now let’s hope we can help again.
There are 2 other members who have talked about AIED. @beckyseattle and @tinea
I hope they’ll join this discussion and help you with answers.
These groups are lifelines, aren’t they? I hope you’ll continue to contribute your knowledge to other members who come along. Will you?

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.