Sunday night I started my new steroid inhaler, Breyna. As I wrote a couple of weeks ago, my pulmonologist, Dr. A, who follows me for interstitial lung disease (ILD), felt this was necessary, given a slight drop in my PFT that was concerning. I held off until this week because I needed to discuss the whole situation with my lead rheumatologist at Boston Medical, Dr. T.
Getting the appointment was not easy. At first it seemed the nearest date was the end of July for an in-person visit and in August for telemedicine. But fortunately, Dr. T directed his assistant to get me in sooner, and so I was able to have a telemed appointment last Friday. We spoke for about a half-hour, and I was able to ask all of my questions about whether this PFT result was due to Sjögren’s disease, rather than scleroderma, and if so, what were the implications. I also needed to understand more about the steroid’s impact, how much more vulnerable I’d be to respiratory infections while taking a steroid, and if I needed to mask in public.
Fortunately, the answer to that the latter questions was no. The inhaled steroid, he said, acts like a topical dressing on an infection. It doesn’t get absorbed systemically. I should be fine with normal precautions.
But what about Sjögren’s? Does the fact that my dry eyes have gotten significantly worse this past year, and the data that my diffusion rate is a bit worse, does that mean I’m having some kind of flair-up? He explained that he has always viewed Sjögren’s as secondary to my scleroderma, but the only way to know if it has become a more significant factor is to do a biopsy, either of a salivary gland or a tear duct.
Usually, he said, those biopsies are negative, because you have to reach a certain evidence threshold of lymphocites in glandular tissue for a positive diagnosis. Other than knowing what we’re dealing with, the only real benefit of that information, if positive, is it would enable me to be eligible for some new Sjögren’s-specific medication that is going to be available in about a year. Up until now, there has been nothing to treat Sjögren’s other than to manage symptoms. I’ve taken Evoxac for decades to make more saliva, and I use several eye-drops to help with dry eyes. But it would be great to have something that actually treats the disease.
So, I need to find out more about the tear duct biopsy, if it risks more damage than it’s worth. If so, I’ll do the salivary gland biopsy. As Dr. A requested and Dr. T agreed, I’ll get an updated CT scan of my lungs and another PFT in the fall, to see if there’s any change due to the inhaler.
The most reassuring information he shared: in 17 years of practice, he has never seen a Sjögren’s flair-up. I may have hit some kind of tipping point, but there is no reason to suspect that all of a sudden my Sjögren’s is doing anything other than what it has done for decades, just plodding along and making my body age a bit faster.
I’ll take that as a win.
Over the weekend, I was in New York City with my younger daughter to see some wonderful art, and I noticed that when I walked on congested streets, the car exhaust made it a bit harder to breathe. Also, when I walked to my train platform at Grand Central, the heat and stale air affected my breathing. So, between that experience and Dr. T’s advice, I decided to start the inhaler when I got home. You have to be careful to brush teeth and rinse your mouth well after using the inhaler so you don’t develop thrush. Not a big deal, just one more part of my daily care ritual.
It’s too early to tell if it is making any difference, but I think I may be inhaling a bit more easily. Sure hope so.
Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.
Image: Roger Bradshaw