My Most Debilitating Symptom

The worst symptom I experience with Sjogren's disease is dry mouth. It's relentless and drinking water does not help. I'm not thirsty but my mouth begs for moisture.

Before I was officially diagnosed, I struggled pretty severely with dry mouth.

Working healthcare shifts with severe dry mouth

I remember when I was working in the Covid units as a respiratory therapist, I would have to run out of rooms and quickly get water in my mouth. My mouth was already dry, but wearing the heavy PPE made it worse.

I remember coughing and feeling like I was choking because I didn't have any saliva to swallow. I kept a bottle of Biotene spray gel on my computer cart at all times just in an attempt to get through the day. I used a lot of Biotene lozenges as well.

Tips for sjogren's dry mouth relief

My dry mouth has improved some over time and treatment, but it is still a very miserable symptom that affects my everyday life. I have to talk for an hour or so continually at time at my current job. I use Xylimelt tablets on really bad days. My dentist also recommended sugar free lemon cough drops and those are very helpful a lot of the time.

I have a chronic dry throat which leads to me having a chronic cough and difficulty swallowing at times. I try keeping a bottle of water near me at all times, but it typically doesn't make too much of a difference for me.

Early warning signs and a delayed diagnosis

I remember when I was in my early 20s, my dentist asked me if I was a mouth breather because I had dry mouth. It's really frustrating to think that if I was with the right provider, I may have been instructed to follow up and potentially gain a diagnosis sooner.

I remember the first time my dry mouth became a major issue for me, and it was before I was diagnosed with Sjogren's. One evening one side of my jaw swelled so much that I couldn't open or close my mouth. I could also compress the swelling and feel saliva pool into my mouth. I was lucky to get into a new dental office fairly quickly. At first, my dentist thought everything happened because I had a cavity that needed filled. A year or two after this, my Sjogren's diagnosis occurred and everything started to make sense.

Protecting my teeth and long-term risks

I went back to my dentist and told them about my diagnosis. I was told I was actually their first patient they had with Sjogren's disease. So together, we worked on trying different things to see what worked for me that they could potentially recommend to other patients. We navigated my dry mouth together, and that's when I found Xyilmelt's. They were so helpful earlier on in my diagnosis from getting through work to being able to sleep through most of the night.

Five years later and I'm no longer the only patient at my dental office with Sjogren's, but my hygienist still says I have the worst case of dry mouth that she has ever seen. Because of dry mouth and my risk for bone loss from primary biliary cholangitis, I have a high risk of losing my teeth. We do Fluoride treatments every 6 months and I have prescription Fluoride toothpaste to use in between.

I try my best to keep my mouth and my teeth healthy, but I still struggle with issues.