Question:
Male, 39 years old, unknown subtype
My son is 39 and has Type II diabetes. We had it under control with diet, and prescriptions for Metformin, Actos, Januvia, &Jardiance. He is overweight. In December 2024 a new endocrinologist took him off of Januvia and Actos and put him on Trulicity. When we couldn’t get Trulicity after 2 months she prescribed Ozempic. He developed so much gas it blew out a umbilical hernia that required surgery. Then did Mounjaro which he tolerates. He is on 10 mg. However, his A1c is now almost 2 points higher, his blood sugars are up in the 160-170 range. His blood pressure is elevated, and he has swelling in legs feet. No weight loss. I’m looking for information on PWS & Mounjaro. I feel it isn’t working for us and would like to return to the other medication. She also wants to put him on insulin. Thanks
Nurse Lynn’s Response:
Medications such as Mounjaro (tirzepatide), Ozempic (semaglutide), and Trulicity (dulaglutide) are weekly injectable medications commonly used to treat type 2 diabetes. These medications act on the GLP-1 receptor, which helps regulate blood sugar, slow stomach emptying, and can reduce appetite. Mounjaro works slightly differently because it is a dual agonist, targeting both the GLP-1 and GIP receptors. In the general population with type 2 diabetes, these medications are often very effective at lowering blood glucose levels and can also promote weight loss.
However, evidence regarding their use in PWS is still limited. Organizations such as PWSA | USA and the International Prader-Willi Syndrome Organization (IPWSO) note that while GLP-1–based therapies are increasingly being used in clinical practice, there are currently no large randomized controlled trials specifically evaluating these medications in individuals with PWS. Because PWS involves hypothalamic dysfunction and unique metabolic characteristics, responses to medications may differ from what is seen in the general diabetes population. Published reports to date have shown mixed results, with some individuals experiencing improvements in blood glucose or appetite, while others see little benefit.
In your son’s situation, several changes deserve careful attention. His A1c has increased, his blood glucose levels are running in the 160–170 range, he has not experienced weight loss, and he has developed swelling in his legs and feet along with elevated blood pressure. These findings suggest that the current medication plan may not be providing the benefit that was expected. When diabetes control worsens after a medication change, it is very reasonable to review the treatment plan with the endocrinologist.
If your son previously had better control with medications such as Metformin, Januvia, Actos, and Jardiance, it is appropriate to ask why those medications were discontinued and whether returning to some or all those medications might be considered. At the same time, the physician may have had specific reasons for stopping certain medications, so having an open discussion about the overall strategy for managing his diabetes is important.
The swelling in the legs and feet is concerning and should also be evaluated. Edema can sometimes be related to medications, fluid retention, blood pressure changes, heart function, or kidney function. It is important that this symptom is discussed with his medical team so that appropriate evaluation can be done.
Regarding insulin, sometimes insulin therapy becomes necessary when other medications are not sufficient to control blood glucose levels. Starting insulin does not mean that anyone has failed. It is simply another tool that can help manage diabetes safely and effectively.
PWSA | USA also has resources available to support families with meal planning, food security, and behavioral strategies that can help support diabetes management alongside medical treatment.
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Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.