Sjogren’s Syndrome – Introduce yourself and meet others

Oh wow, best wishes to you while you heal. I am so sorry to hear of your troubles!

So far, I have only used Prilosec as a long-term medication for Sjorgens but have tested steroids in the past, but that is not something I am interested in taking full-time quite yet. If in the future I have no other options, then I will, but as of now, the gain is not worth the side effects. I am planning to try Prilosec again in the near future; I am just waiting for my next rheumatology appt. to bring this up with my doctor. I was very recently diagnosed with burning mouth syndrome. I'm curious if you have done anything to help with dry mouth. I have tried a lubricant spray, sour candy, and mouthwash, but I still have some trouble with dryness. I seem to get frequent bloody noses because of how dry my mouth/nose is.

@hannahbernard1 I use a gel I buy at Walmart for the nose called Ayr I use a q-tip to apply it in the nose. My rheumatologist has me on Pilocarpine for the Sjogren’s you definitely have to drink enough when you take it or you will start sweating( I had to go work at a factory when Covid hit and I just started the pilocarpine they were doing temperature checks and I had just taken the pill of course my temperature was high 15 minutes later I was good) . I also tried Cevelimine and the sweating was 3 times worse so I’m back on the pilocarpine. I have to also use nasel sprays. I keep gum in my mouth to keep my mouth moist which is bad for me I tend to not drink enough. Heartburn specialist said if I have that stomach surgery no caffeine which I only drink a pop if I go to a restaurant I’ve had to many kidney stones and I can’t drink plain water so I use the mio and crystal light flavors . I hope some of this helps guide you if you have any other questions reach out to me maybe we will both learn something now for me to research some of the other issues you have and see if their causing me problems. I just love this sight it is so helpful and get to meet a lot of knowledgeable people that cares

That is excellent information; thank you so much! It's very helpful. I will definitely reach back out for possible recommendations in the future. I have had Sjorgens for years but haven't dealt with its effects as severely as I have in recent years. It's been a journey and not a fun one! This is my first time really using this platform, and I'm so glad I did. I love reading through past posts/replies. I haven't ever met or spoken to anyone with Sjorgens before, it's very uplifting in a way.

@hannahbernard1 definitely look thru some of the other listings Sjogren’s mentioned in other places and your other symptoms

The best treament for systemic Sjogren's seems to be IvIg which can be very expensive if you are not on Medicare. I'v been on it over a year now and have seen a gradual improvement. I go every 3 weeks and probably will the rest of my life. I hope my veins hold up.

My daughter and I both have Sjogren’s and she was just diagnosed at age 29. We are on Plaquenil and much of the symptomatic relief as listed above including nasal sprays, mouth care, Epicerum for skin care and Cequa and Miebo eye drops. A great resource is the Sjogren’s Foundation. Lots of info, virtual programs and experts
Here is an upcoming virtual session for members:
“The Sjögren's Foundation invites you to a virtual
Members-only Annual Update via Zoom on Wednesday, December 11 at 4:00pm EST.”
You may want to check them out. Early intervention and care helps. Sending you the very best wishes for improved health.

Sooooooo true

Welcome, @marytillson. I moved your posts to this active discussion about Sjogren's syndrome so you can easily connect with others.

- Sjogren’s Syndrome – Introduce yourself and meet others https://connect.mayoclinic.org/discussion/sjogrens/?pg=65

Mary, when were you diagnosed with Sjogren's? How are you doing now?

I’ve never been diagnosed with it. I just have all the symptoms or most of them. . blood work is always normal. I had the lip biopsy it was normal. It’s very discouraging and I can’t get into a rheumatologist. They’re so booked up my ophthalmologist is sure I have sjogren and I have two other doctors say it looks like sjogrens.
Everyday it’s a different trail…. Right now, my greatest trail is my eyes. So dry and painful my sinus and my ear ache. And the anxiety of it all.

Here’s some of my symptoms…each addressed in different ways..
Thyroid problems
Dry eyes that burn, itch, or feel gritty, terrible pain at times
Dry mouth, mouth sores, dental decay, difficulty , speech, taste and dentures
Dry throat, lips, skin
Peeling lips
Headaches
Anxiety
Dryness in my nose
A change in taste or smell
Trouble swallowing at times
shortness of breath
Feeling tired
Trouble concentrating or remembering things
Swelling, pain, and stiffness in your joints
Heartburn, a sensation of burning that moves from your stomach to your chest
Numbness or tingling in some parts of your body
False teeth