Imcivree has helped quiet the constant hunger I once lived with
I struggled with hyperphagia for most of my life
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Note: This column describes the author’s own experiences with Imcivree (setmelanotide). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.
One symptom of Bardet-Biedl syndrome (BBS) is hyperphagia — an intense, hard-to-control hunger. It is a symptom I struggled with for most of my life. Then, in 2022, the U.S. Food and Drug Administration approved Imcivree (setmelanotide) to reduce hyperphagia and support weight loss in certain people with BBS.
Before I started taking it, food was on my mind nonstop. I was constantly wondering when I would eat again or what I could have next. By 3 p.m., I was already asking, “What’s for dinner?”
It was frustrating to feel so consumed by hunger, and it took up so much of my mental energy. I felt hungry all the time. As I got older, it became harder to manage. There were even times when I would sneak food in the middle of the night because I could not stop thinking about eating.
Even when people encouraged me to make healthier choices or practice portion control, it felt like my body would not listen. When I went out to eat with friends, part of me thought, “No one is here to tell me what to eat or when to stop.”
How Imcivree made a difference
After struggling with hyperphagia for most of my life, it was exciting to learn there was finally a treatment for people with BBS. I first learned about Imcivree through my nephrologist. I was hopeful it could help quiet the constant hunger I had lived with for so long.
Imcivree targets the MC4R signaling pathway, which helps regulate hunger. In people with BBS, this pathway can be impaired, contributing to hyperphagia and obesity.
Getting started on Imcivree was quite a process. I was mostly nervous because it required a daily injection, and I hate needles. Over time, though, I got used to the daily injections, and now they feel like a piece of cake.
Because of my limited vision, I need help drawing up the medication each day. Once it’s prepared, I can give myself the injection, but I prefer having help from my parents. With their support, Imcivree has become part of my morning routine. Because vision loss is common among people with BBS, I believe the daily injection should be more accessible for people who are blind or visually impaired.
Within the first couple of weeks of starting the medication, I began to notice a difference. I was less preoccupied with thoughts of food, and for the first time in my life, I felt satisfied after a meal. With food taking up less space in my mind, I had more freedom to work, spend time with the people I love, go places, have fun, and live life fully.
Imcivree is not a cure, and it has not erased every challenge that comes with BBS, but it has helped quiet the constant hunger. It has allowed me to experience fullness and focus more on enjoying life. My hope is that by sharing my experience, others living with BBS and hyperphagia will know they are not alone and that there is hope.
Note: Rare Obesity News is strictly a news and information website about these disorders. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rare Obesity News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to rare obesity disorders.
