Sjögren’s Syndrome – 2 Years Later

About two years ago, I was diagnosed with Sjögren’s syndrome. Sjögren’s syndrome is an autoimmune disease, where your body’s immune system attacks itself. The main symptoms are brain fog, fatigue, chronic cough, dry eyes, dry mouth, dental problems, dry skin, and painful joints.

In my case, since I also have Rheumatoid Arthritis and Fibromyalgia, which also have brain fog, fatigue, dental problems, and painful joints as some of their symptoms, I will only talk about the chronic cough, dry eyes, mouth, and skin. My rheumatologist prescribed me pilocarpine which helps me greatly with the dryness. Now when I talk dry, I mean dry. Before the pilocarpine, it was like I was chewing a mouthful of baking flour all day long. I literally had dry white foam in my mouth at times, it was disgusting and no matter how much I drank, or how much gum I chewed, my mouth was like the Sahara desert. That also made it difficult to talk at times because I had no saliva. The lack of saliva has led to a whole host of dental problems too. I have had two teeth pulled because of failed root canals, a ton of crowns, and erosion on my teeth.

I described to my wife that I felt like I was always chewing on flour.

I wear contacts, in fact, I have for about 25 years now and before pilocarpine I had to use drops all the time and my eyes were still dry as hell. But with the pilocarpine, they are manageable and I no longer need to use the drop, which is a good thing.

All that was annoying enough, but a serious problem I found was that I would just stop sweating when I was working outside, and drinking water, or Gatorade had no effect. My body was simply not processing the fluids and sending them to my sweat glands.

Many years ago, I was a heat casualty, when I suffered heat exhaustion and it took three liters of IV fluids before I was ready to urinate, so I’m aware of the risk of not sweating.

There was a day I was a the farm working, and after a few hours, I simply stopped sweating I was now in danger, so the risk was real.

I have had a chronic cough for about 30 years now and the gabapentin for the Fibro and the pilocarpine together have seemed to neutralize it, which is great. Now when I say chronic cough, I would cough twice in a row about every 5-10 minutes, all day long. It was always a dry cough. I was tested for a million different things and my allergist actually stumbled on it and prescribed me gabapentin. The only reason he figured it out was he has muscular dystrophy and he was thinking outside the box and said that he heard about this and tried that and well it worked.I can say that with the pilocarpine, the Sjögren’s is well managed for me. At least for now since it is a slowly progressing disease.

Thanks to my Rheumatologist.