Your healthcare provider is your first source of information because he or she understands your individual medical needs. Still, the Internet can be a good source of information about acromegaly, and it provides a way for patients and families to "talk" with one another, and share feelings and resources. On this page, you will find links to sites that provide acromegaly resources and support groups.
Acromegaly resources
and support groups
The Pituitary Network Association (PNA)*
The Pituitary Network Association (PNA) is an international nonprofit organization for patients with pituitary tumors and disorders, their families, loved ones, and the physicians and healthcare providers who treat them.
http://www.pituitary.org or call 1-805-499-9973
The Neuroendocrine Clinical Center of Massachusetts General Hospital*
Harvard Medical School*
http://pituitary.mgh.harvard.edu/
National Organization for Rare Disorders (NORD)*
NORD includes acromegaly in its rare-disease database and will e-mail or fax you a full report for a nominal fee.
http://www.rarediseases.org/ or call 1-800-999-NORD
The Hormone Foundation*
The Hormone Foundation is the public education affiliate of the Endocrine Society and is a leading source of hormone-related health information.
*These organizations and Web sites are independently operated and are not managed by Novartis Pharmaceuticals Corporation. Novartis assumes no responsibility for any information they may provide.
Important Information about SandoSupport
As a patient currently receiving or considering therapy with Sandostatin®, you are supported not only by a team of qualified healthcare providers, but also by a variety of resources that are offered through SandoSupport, a program brought to you by Novartis Pharmaceuticals Corporation.
Access:
1-877-LAR-HELP
Call to speak with a dedicated Patient Care Specialist for timely, accurate information regarding insurance verification, acquisition, billing, coding, claims appeal, and much more. Hours of operation: Monday through Friday, 8 AM to 7 PM EST
Patient Assistance Program
A Novartis program that helps qualified patients obtain treatment with Sandostatin® LAR Depot. For more information, visit www.patientassistancenow.com or call 1-800-245-5356.
Education:
My Sandostatin® Info
Register to join and receive information about acromegaly and treatment options, tips for talking to your doctor, diet and lifestyle suggestions, patient stories, and information about support groups. Sign up at: www.MySandostatinInfo.com
Novartis Customer Interaction Center
Get quick and accurate information about specific drug usages by calling 1-888-669-6682
Treatment:
Nurse Home Injection Program
Offers convenient, at-home administration of Sandostatin® LAR Depot by a registered nurse.
INDICATIONS AND USAGE
Sandostatin® LAR Depot (octreotide acetate for injectable suspension) is a prescription medicine indicated for patients in whom initial treatment with immediate release Sandostatin® (octreotide acetate) Injection has been shown to be effective and tolerated for:
- Long-term maintenance therapy in acromegalic patients who have had inadequate response to surgery and/or radiotherapy or for whom surgery and/or radiotherapy is not an option (the goal of treatment in acromegaly is to reduce GH and IGF-1 levels to normal).
- Long-term treatment of the severe diarrhea and flushing episodes associated with metastatic carcinoid tumors.
- Long-term treatment of the profuse watery diarrhea associated with VIP-secreting tumors
In patients with carcinoid syndrome and VIPomas, the effect of Sandostatin Injection and Sandostatin LAR Depot on tumor size, rate of growth and development of metastases has not been determined.
IMPORTANT SAFETY INFORMATION
Warnings and precautions: Treatment with Sandostatin LAR Depot may affect gallbladder function, sugar metabolism, thyroid and heart function, and nutritional absorption, which may require monitoring by your doctor.
Before taking Sandostatin LAR Depot: Tell your doctor if you have a history of heart disease or are taking other medications, including: cyclosporine, insulin, oral hypoglycemic agents, beta-blockers, and bromocriptine.
Common side effects: Most patients experience side effects at some time. Some common side effects you may experience include:
- Acromegaly: diarrhea, gallstones, abdominal pain, and flatulence
- Carcinoid tumors: back pain, fatigue, headache, abdominal pain, nausea, and dizziness
Other information: Patients with carcinoids tumors and VIPomas should adhere closely to their scheduled return visits for reinjection in order to minimize exacerbation of symptoms. Patients with acromegaly should adhere to their return visit schedule to help assure steady control of GH and IGF-1 levels.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.
