First, I’m not against GLP-1 meds. Tools are tools; they seem to have potential as anti-inflammatory medications, especially for people with MCAS, and that’s some really exciting stuff.1
But. It’s so important that we know what we’re signing up for, right?
Even with small doses of GLP1s, people often lose weight. Much of the time, that means a loss of muscle mass.2
Let’s take a step back. For people with symptomatic hypermobility, the problem isn’t so much having bendy joints, it’s having bendy joints that are *unstable*. If you lose muscle, especially if it’s lost quickly, there can be more joint instability…and, of course, this can lead to all sorts of injuries in a population that is incredibly injury prone. So it’s mission critical that if someone is taking a GLP-1, not only are they getting enough protein and all the other nutrients (B vitamins, iron, zinc, etc.) fluids, electrolytes, (nice list here) but that they’re getting enough targeted physical activity to make sure to maintain muscle mass.3
Because believe me, I know how hard it is for people with hypermobile joints to get muscles back when we’ve lost them.
My intent here isn’t to say people with hEDS/HSD, or even MCAS shouldn’t be on GLP1s. Of course they can be useful. I do think that a lot of care and planning should happen to set patients up for success prior and throughout. I do wish we did a better job communicating both the pros and cons so that patients can make informed choices.
Afrin LB, Weinstock LB, Dempsey TT, Aschenbrenner K, Blitshteyn S, Schofield JR. Utility of glucagon-like-peptide-1-receptor agonists in mast cell activation syndrome. Am J Med Sci. 2025 Oct;370(4):377-382. doi: 10.1016/j.amjms.2025.07.006. Epub 2025 Jul 15. PMID: 40675372.
Karakasis P, Patoulias D, Fragakis N, Mantzoros CS. Effect of glucagon-like peptide-1 receptor agonists and co-agonists on body composition: Systematic review and network meta-analysis. Metabolism. 2025 Mar;164:156113. doi: 10.1016/j.metabol.2024.156113.
Mozaffarian D, Agarwal M, Aggarwal M, Alexander L, Apovian CM, Bindlish S, Bonnet J, Butsch WS, Christensen S, Gianos E, Gulati M, Gupta A, Horn D, Kane RM, Saluja J, Sannidhi D, Stanford FC, Callahan EA. Nutritional priorities to support GLP-1 therapy for obesity: A joint Advisory from the American College of Lifestyle Medicine, the American Society for Nutrition, the Obesity Medicine Association, and The Obesity Society. Obesity (Silver Spring). 2025 Aug;33(8):1475-1503. doi: 10.1002/oby.24336