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 Pituitary Tumor 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://rarediseases.org/ or call 1-800-999-6673
Other Resources*
http://www.acromegalysupport.com
*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 contact and
support information
The Sandostatin® Therapy Support Program (STSP) provides a unique and comprehensive level of support to help patients and prescribers get the most out of treatment.
STSP Services
- 1-877-LAR-HELP (527-4357)
A convenient support line staffed by dedicated patient care specialists
- Patient Assistance Program
Helps eligible patients without coverage or financial means to obtain
Sandostatin® LAR Depot (octreotide acetate for injectable suspension)
Offers information and assistance regarding drug acquisition, billing and coding, reimbursement, and patient programs
Additional Support Services
- Nurse Home Injection Program
Convenience of home with the quality of a clinical experience. For eligibility, please call 1-888-LAR-4759 (527-4759)
- Novartis Oncology Medical Information
Provides quick and accurate information for both immediate release Sandostatin® (octreotide acetate) Injection and Sandostatin® LAR Depot, available at 1-888-669-6682
Sandostatin® LAR Depot (octreotide acetate for injectable suspension) is indicated for long-term maintenance therapy in acromegalic patients who have had an 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.
Important Safety Information:
As with immediate release Sandostatin® Injection, the most frequently reported drug-related adverse events were biliary disorders (52%), gastrointestinal disorders (7% to 36%), and injection-site pain (2% to 11%). Hypoglycemia (2%), hyperglycemia (15%), and hypothyroidism (2%) have been reported. While not measured in acromegalic patients receiving Sandostatin® LAR Depot, ECG changes have been reported in patients receiving immediate release Sandostatin® Injection; the degree to which these abnormalities are related to octreotide acetate is not clear, as many acromegalics have cardiovascular disease. 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.
