Acknowledgment: This patient story is sponsored by Chiesi USA and is promoted through the Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing relevant, vetted, and valuable information to patient communities.
Fatigue. Headache. Joint pain. Swelling. Sweating. These are some of the symptoms that first drive many people with acromegaly to a doctor’s office, looking for answers. And for many who are diagnosed, these are also the symptoms they live with each day. People who have surgery, which is usually the first treatment tried after diagnosis, may see their hormone levels improve but still have symptoms. Over time or after being dismissed by their doctors, some people accept that symptoms are simply a part of life with acromegaly. Others may be so used to living with symptoms that they don’t even notice them anymore.
Just because acromegaly is rare does not mean that getting good care is rare. You can find a healthcare team who listens to your concerns and works with you to find a treatment plan that manages your symptoms. Good care starts with rethinking what it means to properly manage acromegaly—which means thinking about controlling more than lab values.
Rethinking acromegaly symptoms
The classic symptoms of acromegaly, like fatigue, headaches, and excessive sweating, are often not noticed or understood as symptoms of acromegaly. Because acromegaly is a rare condition, people often go for years before getting the right diagnosis. Listening to your body and finding a doctor who hears your concerns are part of the acromegaly journey, especially early on. It may take persistence and patience to find the right doctor who can diagnose acromegaly—an important step toward getting treatment.
“My jaw was starting to change. The mouth guard that I used at night was no longer fitting. Then my wedding ring was resized 2 different times.” ~ Casey, living with acromegaly
Finally getting an acromegaly diagnosis can bring on a range of emotions. There may be some relief in learning that your symptoms are real and have a cause, but that may come with uncertainty for the future. Getting a diagnosis is when the learning begins: learning about acromegaly, learning about treatment options, and learning that you may now need to build a new healthcare team.
“I didn’t know what acromegaly was. The things that were going through my mind were, ‘I’m going to die soon.’ I had never been more scared than that because I’d never been sick before.” ~ Mike, living with acromegaly
Finding the right acromegaly treatment option
Surgery is often the first treatment for acromegaly. It’s important not to stop there if symptoms return. About 50% of people living with acromegaly will need medical treatment after surgery. There are a number of medical treatment options, so how do you find the one that is right for you?
You can start by talking with your doctor about your goals for treatment. Treatment goals include managing not only hormone levels, but also managing symptoms. This is important to your quality of life and mental health. It’s also important to think about the experience of getting treatment. For example, some treatments are a shot under the skin (subcutaneous) or a shot into a muscle (intramuscular), while others are taken by mouth. Some treatments are taken each day, while others are taken each week or each month. Some treatments are given at the doctor’s office and others are taken at home. Talk with your doctor about your lifestyle and how treatment may fit into your day-to-day activities.
People with acromegaly may find that their treatment plan needs to change over time. Keep track of your hormone levels and symptoms, and talk about them with your doctor. Talk about how you are doing with reaching your treatment goals. It may be that the dose of your current treatment needs to change, or you may need to switch to a treatment that is a better fit for your lifestyle—and that is okay.
Remember, you have a voice in the decisions made about your health and your healthcare. Learn about the treatment options and the treatment guidelines your doctor will consider so you can feel more confident being part of the conversation. Talking with your doctor about how you feel and how treatment is going will help you decide, together, on the best treatment for you. If you are on treatment for acromegaly and are still having symptoms or side effects from treatment, it may be time to rethink your treatment plan.
“A few months after that first surgery, I started to [get] fatigue and headaches, and really felt like I did before. I had a second surgery… 6 months later and after that surgery, I didn’t return to normal life. In fact, I had very debilitating fatigue and headache. I was on this drug for 3 years when I started to look for more answers.” ~ Amber, living with acromegaly
Taking charge of your care
Tracking symptoms is one way to help your doctor know how well treatment is working. If your hormone levels have improved or are under control but you are still having symptoms, your treatment plan may need to be changed. Tracking can help you notice symptoms you may otherwise overlook, and see all the ways acromegaly affects your life. Tracking can also help you and your acromegaly doctor know if you need to see specialists to help manage other conditions that may be caused by acromegaly. For example, your acromegaly doctor may refer you to a gastroenterologist for stomach issues, a cardiologist for heart-related conditions, or an optometrist or ophthalmologist for vision problems.
“I started finally feeling a lot better. I was starting to plan things that I never would’ve imagined planning. My husband and I booked a trip to Colorado. I’m so proud that I did it, and I can say that I conquered it.” ~ Ellie, living with acromegaly
Finding support from others living with acromegaly
While acromegaly is a rare condition and symptoms can vary by person, there is so much that people living with it have in common. Rethinking what it means to have a rare condition is important to living well with it. It means being a part of a small but mighty community, and being an advocate for yourself and others.
“I learned that each one of us has a story. Each one of our stories is similar, but different. Each one of us is there for the other. By yourself, you can easily be broken. Together, you’ll stand strong.” ~ Ralph, living with acromegaly
Creating the Rethink Acromegaly™ community
Rethinking acromegaly—all the ways it affects your life, what it means to find the right treatment, and how to take charge of your care—can help you live well with it. That is why Rethink Acromegaly™ was made, with the help of the acromegaly community. People like Casey, Mike, Amber, Ellie, Ralph, and Charles shared their experiences and needs. Together with a panel of doctors, nurses, and patient advocates, they helped to build a campaign and many resources to help others in the community rethink what it means to live well with acromegaly. Please visit RethinkAcromegaly.com to learn about:
- Symptoms and the other health conditions acromegaly can cause and how to build a healthcare team to manage your total health
- Treatment options and the guidelines your doctor may use
- Downloadable resources, like the Acromegaly Handbook that you can use to track symptoms, your care team’s contact info, and more
- Video stories from other people living with acromegaly
- Answers to frequently asked questions about acromegaly
You can also sign up for emails to stay informed about updates and get more info, support, and resources that can help you take an active role in your care. We hope you know that living with acromegaly does not mean settling or accepting a new normal. You can rethink what it means to live well with acromegaly, with support from Rethink Acromegaly and the acromegaly community.
“For me, it’s all about, ‘Knowledge is power.’ The more knowledge you have about the condition, the less helpless you feel, and the more empowered you feel to deal with your condition and make good decisions.” ~ Charles, living with acromegaly
©Chiesi USA, Inc. 2024. All rights reserved.
Rethink Acromegaly™ is a trademark of is a trademark of
CHIESI FARMACEUTICI S.p.A.
PP-MC-0115 V1.0
