Moving Forward
12/9/2013

Living With Acromegaly, Connecting with a Supportive Community

connecting with supportive acromegaly community

If you’ve been diagnosed with acromegaly, it’s important to know that you’re not alone. Many other people in America and around the world are dealing with the same issues you are. There are a number of ways for you to connect with others and learn more about your disease. Several online resources can help you understand acromegaly better and find a community of people who want to exchange information and support.

Finding the Site That’s Right for You

There are many different websites that offer support for people with acromegaly. Try a few of them to be sure you find at least one that’s right for you. 

The National Institutes of Health (NIH) has an acromegaly page that provides a number of links to other sources of information and support: http://endocrine.niddk.nih.gov/pubs/acro/acro.aspx. The NIH site also has links to websites with more general information, such as the National Organization for Rare Disorders. From there, you will be able to find more clinical information and helpful stories from others with acromegaly. 

The Pituitary Network Association has an acromegaly portal, acromegaly.org, which offers online chat threads on a wide range of topics. You can write about your symptoms, compare doctors, find out about patient group meetings, or just say hi. Similar resources can be found at DailyStrength.org and MDJunction.com.

AcromegalyCommunity.com is an online resource for patients with acromegaly that is run by actual patients living with the disease. You’ll find a wealth of acromegaly information throughout the site as well as guidance and tips for daily living. This website has also developed a supportive community for patients that includes a discussion forum, a blog, and the ability to register for “One-2-One” support. By registering, patients can build one-on-one relationships and support each other throughout their acromegaly experiences.

Social media sites like Facebook have acromegaly pages you can “like” or join. Feel free to ask questions anonymously or make friends and ask your questions directly. If you’re a new patient, you can gather information, and if you’ve been living with acromegaly for a while, you can probably help someone else. Either way, it’s a win-win.

Key Online Resources for Acromegaly

Acromegaly support and research organizations

 

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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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