Trisha Thaens compiled this very moving video of her Cushing's journey. She says "OK, here is the link. I think it is best watched in full screen (the squarebutton in the bottom right hand corner). I wasn't going to share quite yet, but was asked to because its Rare Disease Day."
Have questions about the new Korlym? How about Korlym vs ketoconazole? About medical vs surgical treatment for Cushing's.
Ask Dr. Theodore Friedman.
Theodore C. Friedman, M.D., Ph.D. has opened a private practice, specializing in treating patients with adrenal, pituitary, thyroid and fatigue disorders. Dr. Friedman has privileges at Cedars-Sinai Medical Center and Martin Luther King Medical Center. His practice includes detecting and treating hormone imbalances, including hormone replacement therapy. Dr. Friedman is also an expert in diagnosing and treating pituitary disorders, including Cushings disease and syndrome.
Dr. Friedman's career reflects his ongoing quest to better understand and treat endocrine problems. With both medical and research doctoral degrees, he has conducted studies and cared for patients at some of the country's most prestigious institutions, including the University of Michigan, the National Institutes of Health, Cedars-Sinai Medical Center, and UCLA's Charles Drew University of Medicine and Science.
Read Dr. Friedman's First Guest Chat, November 11, 2003.
Read Dr. Friedman's Second Guest Chat, March 2, 2004.
Listen live at http://www.blogtalkradio.com/cushingshelp/2012/03/13/questions-about-medical-therapies-for-cushings
Call in to ask your question at
(646) 200-0162
This interview will be archived afterwards at the same link and on iTunes Cushie Podcasts
This is a "knol" that I wrote in 2008. It was accepted by the Open Journal of Medicine.
Now that "knols" are being discontinued, the Open Journal moved this to their site but all of the images were lost in the move. Also, the name of one of their authors was added to my knol.
I'm posting this here to keep the information as it was, not as it has morphed into.
Korlym was approved February 17th, 2012 for persistant Cushing's. More information here.
Corcept will hold a conference call on Tuesday, February 21, 2012 at 9:00 a.m. Eastern Time (6:00 a.m. Pacific Time) to discuss this announcement. To participate in the live call please dial 1-800-264-7882 from the United States or +1-847-413-3708 internationally. The pass code is 31838602. Please dial in approximately 10 minutes before the start of the call.
A replay of the conference call will be available through March 6, 2012 at 1-888-843-7419 from the United States and +1-630-652-3042 internationally. The pass code is 31838602.
For Immediate Release: Feb. 17, 2012
Media Inquiries: Morgan Liscinsky, 301-796-0397; morgan.liscinsky@fda.hhs.gov
Consumer Inquiries: 888-INFO-FDA
FDA approves Korlym for patients with endogenous Cushing’s syndrome
Today, Korlym (mifepristone) was approved by the U.S. Food and Drug Administration to control high blood sugar levels (hyperglycemia) in adults with endogenous Cushing’s syndrome. This drug was approved for use in patients with endogenous Cushing’s syndrome who have type 2 diabetes or glucose intolerance and are not candidates for surgery or who have not responded to prior surgery. Korlym should never be used (contraindicated) by pregnant women.
Prior to FDA’s approval of Korlym, there were no approved medical therapies for the treatment of endogenous Cushing’s syndrome.
Endogenous Cushing’s syndrome is a serious, debilitating and rare multisystem disorder. It is caused by the overproduction of cortisol (a steroid hormone that increases blood sugar levels) by the adrenal glands. This syndrome most commonly affects adults between the ages of 25 and 40. About 5,000 patients will be eligible for Korlym treatment, which received an orphan drug designation by the FDA in 2007.
Korlym blocks the binding of cortisol to its receptor. It does not decrease cortisol production but reduces the effects of excess cortisol, such as high blood sugar levels.
The safety and efficacy of Korlym in patients with endogenous Cushing’s syndrome was evaluated in a clinical trial with 50 patients. A separate open-label extension of this trial is ongoing. Additional evidence supporting the agency’s approval included several safety pharmacology studies, drug-drug interaction studies and published scientific literature. Patients experienced significant improvement in blood sugar control during Korlym treatment, including some patients who had marked reductions in their insulin requirements. Improvements in clinical signs and symptoms were reported by some patients.
The most common side effects experienced by endogenous Cushing’s syndrome patients treated with Korlym in clinical trials were nausea, fatigue, headache, arthralgia, vomiting, swelling of the extremities, dizziness and decreased appetite. Other side effects of Korlym include adrenal insufficiency, low potassium levels, vaginal bleeding and a potential for heart conduction abnormalities. Certain drugs used in combination with Korlym may increase its drug level. Health care professionals must be aware of the potential for drug-drug interactions and adjust dosing or avoid using certain drugs with Korlym.
Korlym should never be used by pregnant women. Although pregnancy is an extremely rare occurrence in Cushing’s syndrome patients because of the suppressive effect of excess cortisol on female reproductive function, Korlym will carry a Boxed Warning advising health care professionals and patients that the therapy will terminate a pregnancy.
The FDA has determined that a Risk Evaluation and Mitigation Strategy (REMS) is not necessary for Korlym to ensure that the benefits outweigh the risks for patients with endogenous Cushing’s syndrome. Several factors were considered in this determination including the following:
The company has voluntarily proposed distributing Korlym through a central pharmacy to ensure the timely, convenient and appropriate delivery of the drug to Cushing’s patients or to the health care institutions where this therapy may be initiated. Most retail pharmacies are unlikely to keep adequate supplies of the drug for this rare condition and central distribution will give patients with Cushing’s syndrome better access to Korlym.
Korlym is manufactured by Corcept Therapeutics of Menlo Park, Calif.
For more information:
The FDA, an agency within the U.S. Department of Health and Human Services, protects the public health by assuring the safety, effectiveness, and security of human and veterinary drugs, vaccines and other biological products for human use, and medical devices. The agency also is responsible for the safety and security of our nation’s food supply, cosmetics, dietary supplements, products that give off electronic radiation, and for regulating tobacco products.
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RSS Feed for FDA News Releases [what is RSS?]Page Last Updated: 02/17/2012
From http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm292462.htm
Brochures for Primary Care Physicians, to increase awareness of Cushing's syndrome. In English and Spanish
These were sent to me by a Facebook friend who wrote:
it's Vida A, I have writen in the facebook group that I would like to upload some information that I think it's very useful. Most of it is in Spanish but maybe someone is able to understand it.
I've found it in: www.ciberer.es
then you go to enfermedades raras > divulgación social > boletin social and then it's in Boletin Social number 3 (dedicated to Cushing)
I think it may be very useful
Thanks very much
Núria (Vida A)
Excerpt from: http://thechart.blogs.cnn.com/2012/02/14/
making-sense-of-your-childs-health-numbers/
"...Unfortunately, as obesity becomes more common among children, diseases once thought to be primarily a problem of adulthood are showing up in kids. For this reason, children should be screened for medical complications of obesity, such as diabetes, high blood pressure and high cholesterol.
Not everyone agrees when you should start screening your children, but the latest recommendation is to test cholesterol between 9 and 11 years old and then again between 17 and 21. Ask your pediatrician for his or her opinion based on your child’s BMI. Blood pressure can be measured with a cuff at the doctor’s office, and diabetes and high cholesterol can be checked with simple blood tests.
These tests may include blood sugar, hemoglobin A1c and insulin levels for diabetes; a lipid panel (such as cholesterol and triglycerides) which, along with blood pressure, is a marker for heart disease; and tests for liver problems that can occur with obesity.
In some situations it might be important to rule out medical causes of obesity. For example, patients who have a higher concentration of fat in the neck and head region could have Cushing's syndrome, and those who are relatively short for their weight and age and have other symptoms might have low thyroid function..."
Read the entire article at http://thechart.blogs.cnn.com/2012/02/14/
making-sense-of-your-childs-health-numbers/
Authors: Toja, Paola M.1; Branzi, Giovanna2; Ciambellotti, Francesca2; Radaelli, Piero3; De Martin, Martina1; Lonati, Laura Maria2; Scacchi, Massimo; Parati, Gianfranco; Cavagnini, Francesco1; Giraldi, Francesca Pecori
Source: Clinical Endocrinology, Volume 76, Number 3, 1 March 2012 , pp. 332-338(7)
Publisher: Wiley-Blackwell
Abstract:
Objectives Sustained hypercortisolism impacts cardiac function, and, indeed, cardiac disease is one of the major determinants of mortality in patients with Cushing's syndrome. The aim of this study was to assess the clinical relevance of cardiac structure and function alterations by echocardiography in patients with active Cushing's syndrome and after disease remission.
Study design Seventy-one patients (61 women, 10 men) with Cushing's syndrome and 70 age-, sex- and blood pressure-matched controls were enrolled. Echocardiography was performed in 49 patients with active disease and at several time points after remission in 44 patients (median follow-up 46·4 months), and prevalence of abnormal left ventricular mass measurements and systolic and diastolic functions indices was compared between patients with active disease, after remission and controls. Twenty-two patients were evaluated both before and after remission.
Results Up to 70% of patients with active Cushing's syndrome presented abnormal left ventricular mass parameters; 42% presented concentric hypertrophy and 23% concentric remodelling. Major indices of systolic and diastolic functions, i.e. ejection fraction and E/A ratio, respectively, were normal. Upon remission of hypercortisolism, left ventricular mass parameters ameliorated considerably, although abnormal values were still more frequent than in controls. Both cortisol excess and hypertension contribute to cardiac mass alterations and increase the prevalence of target organ damage.
Conclusions Cushing's syndrome is associated with an increased risk for abnormalities of cardiac mass, which ameliorates, but does not fully disappear after remission. Systolic and diastolic functions are largely within the normal range in these patients.
Document Type: Research article
DOI: http://dx.doi.org/10.1111/j.1365-2265.2011.04206.x
Affiliations: 1: Ospedale San Luca, Neuroendocrinology Research Lab, Istituto Auxologico Italiano IRCCS 2: Department of Cardiology, Ospedale San Luca, Istituto Auxologico Italiano IRCCS 3: Department of Medical Sciences, University of Milan
Buy this article here: http://www.ingentaconnect.com/content/bsc/cend/2012/00000076/00000003/art00004
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Focusing on the critical information needed at the point of care, the app includes topics such as Cushing's disease, diabetic ketoacidosis, managing acute type I and type II diabetes, hypercholesterolemia, adrenal insufficiency, hyperthyroidism, thyroid storm, and much more. Key facts are presented in tables and flow-charts to allow quick reference to crucial information.
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To view or purchase the app in the Apple App store (also available for android) or go to endoemergencies website for information and to view a sample section. Qualified reviewers may contact us for promo codes.
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