April marks Sjögren’s Syndrome Awareness Month, so I thought it was high time I shared my Sjögren’s diagnosis journey now that I’m finally getting answers and treatment to deal with a condition that has been plaguing me for years.
It all started in November after my laparotomy surgery. The gastroenterologist presiding over my care in Pittsburgh had noticed how much Restatis (cyclosporine for the eyes) and other eye drops I was using for dry eye and observed how often I was needing ice chips for dry mouth while I was NPO from the obstructions, the surgery and the post-op ileus. The skin on my arms and legs was also flaking due to the dryness of the hospital room. He checked my IgG4 levels suspecting an overarching autoimmune problem and unsurprisingly, he saw my levels to be borderline high.
I remember him walking into my room saying, “Tina, I think you have an IgG4 autoimmune complex and not solely Crohn’s disease. You have a Sjögren’s-like expression that I’ve been considering for some time now.” I asked him what that meant and he asked if I felt like I had dry eyes, dry skin, dry mouth and vaginal dryness and I remember saying yes to all of it. He said he saw this kind of expression in 5% of IBD patients and that it was a newly identified subtype of IBD, which usually results in more severe lesions that can be successfully treated with broad immunosuppressants.[1] He said I would likely need to be treated with Hydroxychloroquine and an immunosuppressant like 6mp or Azathioprine as my Stelara would not cover this type of autoimmune complex.
While I was devastated to receive another diagnosis, I felt incredibly relieved at the same time. For years, I had been going in circles trying to get my eye inflammation treated and my vaginal dryness addressed via topicals to no avail or understanding. And here I was being validated that there was something larger going on, something I had suspected for a long time but had no knowledge about.
I came back to New York in the thick of winter when there is a lot of dryness in the air. Within a few weeks, my Sjögren’s flared up very badly. A little known symptom of Sjögren’s is severe vaginal inflammation and dryness, something that left me crying in pain and wanting to visit the ER at times. I avoided the ER at all costs due to rising rates of Omicron in December and January and had to use many topical steroidal agents and lubricants to get the stinging and burning to calm down. I also had to find a new rheumatologist who specializes in Sjögren’s and truly gets how bad it can get for us females to live with such severe vaginal symptoms.
During this time, I was still recovering from surgery, dealing with a nasty sinus infection from the NG tube, having major issues with my stoma and being told I had autoimmune hepatitis and Ehlers Danlos of the gut. I was a mess emotionally and couldn’t handle yet another diagnosis. I took a deep breath and told myself to hang on and that things would get better.
Even though many people are diagnosed with Sjögren’s via a lip biopsy, my new rheumatologist said it wasn’t needed because my symptoms were so classically representative of Sjögren’s that she didn’t need further clarification or to put me through anything else.
We slowly started long-term medications to control the Sjögren’s. We started at small doses and built up to an optimal dose. I first started Hydroxychloroquine in January and given all my comorbidities, I needed to have an EKG beforehand to ensure no heart issues or interactions with some of my other medications. I also had the choice to start either 6mp or a biologic called Rituximab. I chose 6mp as I’ve been on it before and we started it 5-6 weeks after starting the Hydroxychloroquine. I was concerned about trying Rituximab because it appears to wipe out antibodies built against COVID even after vaccination.[2] And I cannot forget to mention that my health insurance is already giving a hard time approving one biologic that I can’t imagine what hell would break loose if I was put on another biologic.
Today, while it’s been a rough 4-5 months from a surgical recovery and multiple new diagnoses, I am finally feeling more like myself than I have been in years. My symptoms are improving and I feel like I am able to have some quality of life again after a back-breaking surgery and pandemic. I am thankful that my gastroenterologist in Pittsburgh picked up on my Sjögren’s otherwise I would still be going in circles and be in and out of the ER.
Below are some fun facts about Sjögren’s Syndrome:
Did you know?
* As many as 4 million Americans have been diagnosed with Sjögren’s with approximately 2.5 million who are still undiagnosed.
* 9 out of 10 diagnosed with Sjögren’s are women
* Sjögren’s can be a primary diagnosis but more likely to come as a diagnosis secondary to other immune-mediated inflammatory diseases (IMIDs), including lupus (SLE), rheumatoid arthritis and even inflammatory bowel disease (IBD).
* It can take several years to diagnose Sjögren’s because of the multi-system issues it causes and specialists are generally only trained to look at one organ or system.[3]
If you have any of the symptoms I mentioned earlier, please do discuss with your doctors to prevent delayed diagnoses and treatment. Knowledge is power!
…And this is where I stand today and how I have been owning my health conditions in the midst of the turmoil I have faced these last several months. I will keep getting better slowly but surely. I have full faith in that.
Onwards and upwards, my friends, and here’s to love, light & peace this Sjögren’s Awareness Month! Thank you for your readership as always. Your comments are most welcome!
[1] Wang, Zhujun & Zhu, Min & Luo, Chengxin & zhen, Yu & Mu, Jingxi & Zhang, Wenyan & Ouyang, Qin & Zhang, Hu. (2018). High level of IgG4 as a biomarker for a new subset of inflammatory bowel disease. Scientific Reports. https://www.nature.com/articles/s41598-018-28397-8
[2] Levavi, H., Lancman, G., & Gabrilove, J. (2021). Impact of rituximab on COVID-19 outcomes. Annals of hematology, 100(11), 2805–2812. https://doi.org/10.1007/s00277-021-04662-1
[3] Sjogren’s Foundation. (2022, April 11). Sjögren’s Foundation. Retrieved April 11, 2022, from https://www.sjogrens.org/
