HS Patients Share Benefits of GLP-1s on their HS Symptoms

myHSteam Community poll sparks conversation and supports existing research

A few weeks ago one of our clients, a senior executive of a European pharmaceutical company, asked me whether patients with hidradenitis suppurativa (HS) were talking much about GLP-1s and whether they helped with their HS symptoms. I checked on myHSteam, our Community with more than 48,000 HS patients, and indeed saw members talking about it. 

With a quick poll, we were able to confirm that patients did see positive changes in their HS symptoms after starting treatment on medications like Ozempic®, Wegovy®, Mounjaro®, or  Zepbound®. While this is just a small sampling of the community, I wanted to share the results beyond our community because they echo other small studies reporting potential benefits for HS patients and support the case for further research on HS and GLP-1s. Furthermore, this is a great example of how we can learn from patient communities in conditions that are highly comorbid with obesity and diabetes to see how GLP-1s might impact those conditions.  

Our poll asked “Has Anyone with HS Tried a GLP-1 Medication?  Did You Notice Any Symptom Changes”. HS patients taking GLP-1’s including Mounjaro, Ozempic, Wegovy, and Zepbound quickly responded to the question, and the poll received 27 responses within days. 

The patients who responded appear to have been prescribed a GLP-1 either for treating diabetes or obesity.

• 17 (63 percent) said their GLP-1 medication helped or reduced their HS symptoms. 
• Seven (26 percent) said GLP-1s helped with weight or diabetes management, but they saw  no impact on their HS symptoms.
• Two respondents thought their HS may have gotten worse while they were on GLP-1s.
• One person who had been on a GLP-1 for four months said they weren’t sure if there was an impact.

Here is a sampling of how myHSteam members described their experiences being on GLP-1:

• “My HS is certainly greatly improved but not gone altogether. I get smaller flares and less erupting flares.  Bumps appear but go down without bursting most times.” 
• “Once my A1C leveled out, my HS outbreaks dramatically decreased.  I no longer need antibiotics for my HS.”
• “I have been on a GLP-1 for a year and I have only had 1 occurence. It has helped a ton but I think for me it comes down to eating healthy now. I have had so many occasions eating poorly and having many [HS] flare ups in the past.”
• “My HS reduced so much I could wear a tank top for the first time in 2 decades!” 
• “Been on a GLP-1 for 8 months. Lost nearly 4 stone – not much difference in my HS. It’s still progressing”
• “It does help control my A1C, but the only thing that has helped my HS is an antibiotic regimen and creams”

This certainly is not medical research, and the sample size is tiny, but the findings align with the limited research into how GLP-1 medications impact HS.  

• A 30 person patient study of semaglutide by Lyons et al. concluded GLP-1 treatments led to better quality of life and fewer flare ups for HS patients. 
• A patient survey by Gupta et al., with 22 respondents, found 62 percent reported reduced flares, 68 percent saw a reduction in new lesions, and 59 percent saw less impact from HS on their daily activities.

I’m not a medical professional, but there is logic that aligns with these reported patient experiences. HS is associated with obesity, insulin resistance, metabolic syndrome, and elevated inflammatory markers. HS severity often correlates with metabolic burden, and GLP-1s are shown to help improve that burden. GLP-1s are also associated with weight loss, and with less weight, HS patients could see less skin-on-skin friction, improved mobility, and as a result relief from their symptoms.  

While more medical research and controlled trials are needed to draw a clear interaction between GLP-1s and HS symptoms, our Community members’ experiences show that other patients experiencing obesity or diabetes may want to discuss this option with their physician. 

I’m so thankful that our Community members are able to share their experiences with each other and those who are researching treatments. Listening to patient voices always leads to hope and better clarity for everyone involved. 

We are going to do larger quantitative research on this topic. What other conditions besides obesity, diabetes, and HS do you think might see symptom improvements while on a GLP-1?   With patient communities in 67 different conditions we have the ability to cast a wide net.  Please contact me on LinkedIn or email me at  [email protected].