How do you celebrate Autoimmune Awareness Month?
A potential new autoimmune diagnosis highlights the need for diligence
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How do you celebrate an awareness day, week, or month?
I know how we celebrate other special days on the calendar. New Year’s Eve? Watch the ball drop and kiss at midnight. Passover? Dinner with the family, and no bread for a week. Birthdays? Celebrate with loved ones, perhaps dinner and a show.
Rare Disease Day on Feb. 28 was filled with awareness posts, advocacy events, shared stories, and information about rare diseases. But what am I doing for Autoimmune Awareness Month in March? I’m contemplating another autoimmune diagnosis.
That’s definitely not by choice, but it is where I find myself this month.
I was diagnosed with sarcoidosis in 2015, but I’d been living with a variety of symptoms and seeking answers for many years before then. Technically, sarcoidosis is not an autoimmune disease, but it is often included in the autoimmune conversation because it involves an overactive immune response. In sarcoidosis, the immune system causes systemic inflammation and clusters of inflammatory cells called granulomas, which can affect any part of the body.
Autoimmune soup
About four years into my search for answers — though still four years before I learned about sarcoidosis — I received my first autoimmune diagnosis: Hashimoto’s disease, which causes hypothyroidism, or an underactive thyroid gland. I was told that I’d be on medication forever, but that it otherwise wouldn’t be a problem. The bigger concern was that it didn’t explain my joint pain, swelling, or rashes. It did give us a direction, though.
As with sarcoidosis, autoimmune diseases are believed to be caused by a combination of genetic predisposition and an environmental trigger. This causes the immune system to misfire, attacking the body’s healthy cells. Often, people with this type of misdirected response develop multiple autoimmune conditions.
With that in mind, the rheumatologist determined that I had “some kind of arthritis, probably autoimmune.” He explained that there is a family of conditions with similar symptoms, noting that distinguishing among them can be difficult. Over the next four years, a new rheumatologist and I considered several of these autoimmune arthritis diseases and tried different treatments for each.
When none of them seemed to do the trick, my dermatologist suggested sarcoidosis. She had read an article and seen a presentation on cutaneous sarcoidosis, and thought it resembled the bumps and rashes on my legs. A biopsy came back “consistent with sarcoidosis,” and a referral for a chest X-ray confirmed the diagnosis.
This naturally led us to more targeted treatments, which resulted in significant improvement. Still, there is no cure for sarcoidosis, and given the dynamic nature of immune-mediated diseases, I continued to have symptoms that weren’t managed well enough for me. Eventually, I decided to try yet another rheumatologist.
We started over again with a review of my medical history, a physical exam, and the most blood I’ve ever had drawn in one visit. When we reviewed the results at my next appointment, she noted that I have “a little bit” of rheumatoid arthritis and “a little bit” of Sjögren’s disease. Neither seems to be “full-blown,” but the levels are enough to affect me. She said I should think of it like autoimmune soup, with all the different “flavors” mixing together in one pot.
Adding a new flavor
Whenever my doctors order blood work, a few markers are out of normal range, but usually not enough to cause concern. Usually.
There have been a few times when my liver enzymes were elevated enough for the doctors to worry. Once, I was sent to a hepatologist in a panic, but by the time he repeated the blood work, the numbers had dropped, so it felt like a waste of time. Another time, it forced a change in my medication, which we thought solved the problem. Five years ago, I was sent for a FibroScan (noninvasive liver ultrasound), then told I “just” had a fatty liver and needed to lose weight.
My rheumatologist recently expressed concern that my liver enzymes are still elevated. Because it’s been this way for so long, she referred me to another hepatologist. My fear was that it could be sarcoidosis, now affecting my liver.
She ran more tests, and the results came back “suggestive of possible autoimmune hepatitis.” Our next step is another FibroScan next week, and pending the results, a possible liver biopsy to confirm the diagnosis.
With sarcoidosis and autoimmune conditions, we can never fully feel “settled.” Our symptoms flare and fluctuate, but that’s not all. Granulomas can build up, or our immune system can attack another organ at any time. That’s why it’s so important to stay on top of things and address them as early as possible.
They say a watched pot never boils. Continuing to monitor any anomalies as we manage sarcoidosis and autoimmune diseases is the best way to prevent our “soup” from boiling over.
Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sarcoidosis.
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