All the Different Sjogren's Experiences

Another look at the study into Sjogren's subgroups



I’ve previously written a short post about the various types of Sjogren’s, but because I like the study so much and think it’s so important, I decided to write another one today. Our experiences with Sjogren’s are so varied that I think our conditions should really be categorized under different headings so that the medical community can study and treat them separately.


For example, I was diagnosed with primary Sjogren’s based on the presence of SSA and SSB (antibodies), but when specialists performed tests on my eyes and did a lip biopsy, there was no significant dryness detected. In fact, I never complained about those things to my physicians and had always emphasized symptoms of fatigue, pain, and feeling like I had the flu. Because Sjogren’s is always associated with dryness (which is present for a lot of patients), I think that was a reason it took so long for me to be diagnosed.


"Symptom severity varies greatly between individuals; some report unbearable pain and dryness, some report debilitating fatigue, but others report few symptoms."

The Lancet published a study in October 2019, that looked to identify subgroups of Sjogren’s based on differences in symptoms (and linking them to potential differences in biology and responsiveness to treatments). The study noted that symptoms among patients “varies greatly between individuals; some report unbearable pain and dryness, some report debilitating fatigue, but others report few symptoms.” Because of how complex and varied symptoms can be among patients, it doesn’t make sense for the medical community to be looking for a one-size-fits-all solution. And, indeed, they haven’t been successful in finding an effective treatment for Sjogren’s.


But once the study looked into potential subtypes of Sjogren’s by looking at common groupings of symptoms among Sjogren’s patients, scientists were able to identify significant differences in the blood results of the different subgroups. They were also able to identify certain treatments that worked better for certain subtypes.


The study looked at patient reports of 5 common symptoms associated with Sjogren’s: dryness, fatigue, pain, anxiety, and depression. The study performed a clustering analysis, which in layman’s terms, is looking for groupings where a group's members are most similar to one another and most different to those outside of its group. Based on that, 4 subgroups of Sjogren’s were identified:


  1. Low Symptom Burden (LSB): with patients who reported low scores on all 5 symptoms;

  2. High Symptom Burden (HSB): with patients who reported high scores on all 5 symptoms;

  3. Dryness Dominant with Fatigue (DDF): with patients who reported significant dryness and fatigue; and

  4. Pain Dominant with Fatigue (PDF): with patients with high pain and fatigue scores.


The study indicated that “from a therapeutic perspective, the biological differences between the four subgroups might inform future stratified approaches.” This means that researchers might be more successful in finding effective treatments for individual subgroups, rather than looking for a broad solution for all Sjogren's patients. For example, when looking over past studies on the effectiveness of hydroxychloroquine (Plaquenil), which showed disappointing results among the general Sjogren’s population, the study found significant improvement among patients with High Symptom Burden (HSB). Similarly, there was a significant response to rituximab among patients with Dryness Dominant Fatigue (DDF).


Personally, I think I belong to the Pain Dominant Fatigue (PDF) subgroup. Unfortunately, I haven't found a medication that works particularly well for me yet (other than Prednisone). I also think maybe the Pain Dominant Fatigue group could be broken down even further into subgroups (but I will leave that to the scientists and medical researchers).


With this first step in recognizing the different subtypes of Sjogren's, perhaps future studies could be tailored to identifying biological mechanisms underlying the individual subgroups. And treatment options could be developed that effectively address the different subgroups of patients.


What type of Sjogren's do you have and has any treatment helped you? Please share and like if you found this post useful or interesting.


For the full study, click on the link below:

https://www.thelancet.com/journals/lanrhe/article/PIIS2665-9913(19)30042-6/fulltext




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Hi, thanks for stopping by!

I set up this website to share some of my own experiences dealing with Sjogren’s, from difficulties in obtaining a diagnosis to ongoing struggles to manage my symptoms.  It is my hope that through sharing my experiences, I can help others in various stages of living with Sjogren’s.  More than that, I hope this website will become a resource where anyone struggling with Sjogren’s can share his or her experiences and learn from those of others.

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