Moving Forward

Living With Acromegaly—A Patient Perspective

Living with acromegaly can be challenging and likely has a big impact on your day-to-day life. It is important to know that you are not alone–there are other patients also living with this condition. If you have been diagnosed with acromegaly, it is important that you continue to take an active part in your healthcare and personal well-being.

Your healthcare provider is your best source of information about taking care of yourself and living with acromegaly. In addition, many patients seek connection with other people living with this condition, and these relationships can be empowering to remain proactive and move forward.

A survey, funded by Ipsen, was recently conducted with acromegaly patients, most of whom were active in an acromegaly support group. This survey was conducted to better understand the impact of acromegaly from a patient's point of view. Nineteen patients shared their opinions of and experiences with living with acromegaly, as well as their path to diagnosis and its impact on their lives. 

Knowledge Is Power

Patients reported that they were interested in learning as much as they could about acromegaly in order to fully understand the condition and to further their proactive management of the disease. Patients were also interested in sharing this knowledge as educators or advocates to raise awareness of this condition.

For the patients surveyed, having a complete understanding of acromegaly and its treatment meant feeling empowered to help gain control of their condition.

Thoughts About Treatment

Although acromegaly cannot always be cured, it can often be managed with proper treatment. Many patients in the survey reported shock or surprise at learning they may need surgery or possibly may need to be on medication for the long term. Questions and concerns about available treatment options included:

  • Will the treatments work?
  • Will my symptoms go away?
  • What are the side effects?
  • Will I ever look like myself again?
  • Will GH and IGF-1 levels return to normal?
  • Why surgery?

Patients were focused on the impact of the disease on their life, and they expressed a desire to get beyond reminders of their disease.

A True Patient–Healthcare Professional Partnership

In the study, patients reported a broad range of experiences with their healthcare providers—from trusting, collaborative partnerships with a team of specialists to poor relationships in which providers didn't listen or take their concerns seriously.

According to patients surveyed, a true patient–healthcare professional partnership consists of:

  • Recognition by the healthcare professional that the patient can be a source of knowledge and contribute to his or her care
  • The sharing of information between healthcare professional and patient
  • Flexibility of the healthcare professional to listen and work with each patient

The Importance of Support

The majority of patients in the study were empowered by relationships with other patients or through support groups. They reported how important it was to hear each others' stories, encourage each other, and become advocates for both themselves and other patients with acromegaly. Patients not connected to a support group reported feeling helpless and lonely.

Study Conclusions

Acromegaly can be a life-changing diagnosis with profound, ongoing effects on patients’ lives. Patients struggle with many issues they fail to openly share with their healthcare providers, but may discuss these issues more easily with other acromegaly patients. Better collaboration between patients and care providers could lead to increased patient satisfaction.

Read more about talking with your healthcare provider. 

Get additional information about connecting with a support community.

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What is Somatuline® Depot (lanreotide) Injection?

Somatuline Depot is a prescription medicine used for the long-term treatment of acromegaly when surgery or radiotherapy has not worked well enough or the patient is not able to have surgery or radiotherapy.

It is not known if Somatuline Depot is safe and effective in children.

Important Safety Information

Who should not take Somatuline Depot?

Do not take Somatuline Depot if you are allergic to lanreotide.

What are the possible side effects of Somatuline Depot?

Somatuline Depot may cause serious side effects, including:

  • Gallstones. Tell your healthcare professional if you get any of these symptoms:
    • sudden pain in your upper right stomach area (abdomen)
    • sudden pain in your right shoulder or between your shoulder blades
    • yellowing of your skin and whites of your eyes
    • fever with chills
    • nausea
  • Changes in your blood sugar (high blood sugar or low blood sugar). If you have diabetes, test your blood sugar as your healthcare professional tells you to. Your healthcare professional may change your dose of diabetes medicine
  • Slow heart rate
  • High blood pressure

The most common side effects of Somatuline Depot in people with acromegaly include diarrhea, stomach area (abdominal) pain, nausea, and pain, itching, or a lump at the injection site.

Somatuline Depot may cause dizziness. If this happens, do not drive a car or operate machinery.

What should I tell my healthcare professional before receiving Somatuline Depot?

  • Tell your healthcare professional if you have diabetes or gallbladder, thyroid, heart, kidney, or liver problems
  • Tell your healthcare professional if you are pregnant or plan to become pregnant as Somatuline Depot may harm your unborn baby. Tell your healthcare professional if you are breastfeeding or plan to breastfeed. It is not known if Somatuline Depot passes into your breast milk. You and your healthcare professional should decide if you will take Somatuline Depot or breastfeed. You should not do both
  • Tell your healthcare professional about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Somatuline Depot and other medicines may affect each other, causing side effects. Somatuline Depot may affect the way other medicines work, and other medicines may affect how Somatuline Depot works
  • Especially tell your healthcare professional if you take insulin or other diabetes medicines, a cyclosporine (Gengraf, Neoral, or Sandimmune), a medicine called bromocriptine (Parlodel, Cycloset), or medicines that lower your heart rate, such as beta blockers

Tell your healthcare professional if you have any side effect that bothers you or that does not go away. These are not all the possible side effects of Somatuline Depot. For more information ask your healthcare professional.

You may report side effects to FDA at 1-800-FDA-1088 or Ipsen Biopharmaceuticals, Inc.
at 1-888-980-2889.

Click here for Patient Information and full Prescribing Information.

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©2017 Ipsen Biopharmaceuticals, Inc. October 2016. SMD-US-000588


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