staticnrg

Do you want to keep the Cushing's Help message boards? Do you know that MaryO spends thousands out of her own pocket to keep it running? Do you want to wake up one day and find it gone? If the answer to the last one is "no", then take the time to donate what you can each month/quarter/year. I know I'm not here much anymore since my BLA, but I still care that others have this support. I would have never found a doctor to help me nor understood this disease if it hadn't been for this site. There are so many more out there who need them, too. If you are here, I suspect you do, too. If you look at the right side of the main page when you login, you will see the donation site and Donations: 801.61 USD || Goal Amount: 2906.00 USD. It shows we still need to donate at least $2104.39 for this year. So, skip that lunch out at McDonalds or Wendy's and donate the $5 or $6 dollars instead. PBJ will taste really good that day! If we all donate just a little bit every month, it will make a difference. Thank you, Robin

ALERT DR. F PATIENTS: The Tuesday night, 9/18/12, clinic, has been moved to Wednesday, 9/19/12. The Tuesday night, 9/25/12, clinic, has been moved to Monday, 9/24/12. The Tuesday night, 10/2/12, clinic, has been moved to Wednesday, 10/3/12. The Tuesday night, 10/9/12, clinic, has been moved to Wednesday, 10/10/12. Deposits as always will be due at 5PM, the Friday before next week's clinic. No 10" drive-by phone appointments September 17, 18, 25, and 26. No 10" drive-by phone appointments October 1, 2, 8 and 9.

I think we can take questions in the BTR chat, too, can't we, MaryO?

Cushings-Help.com Announces The Availability Of An Investigational Drug ForSevere Cushings's Syndrome On a Compassionate Use Basis November, 2011 We would like to make patients aware that mifepristone, aninvestigational drug that blocks the action of cortisol and is being developedby Corcept Therapeutics Incorporated, is now available on a compassionate usebasis for eligible patients in the United States with Cushing’s syndrome whohave no other treatment options. Under this compassionate use program, the FDA allowsseriously ill patients who lack satisfactory alternative treatment options touse an investigational new drug that is still under development. Corcept has completed a Phase III trialinvestigating the safety and efficacy of mifepristone in patients withendogenous Cushing’s syndrome. Theinformation from that study has been submitted to the FDA for review of safetyand efficacy.. For information on thetrial results see http://www.corcept.com/cushings_clinical_trials. The company has submitted a New DrugApplication (NDA) seeking approval for this drug. Patients interested in using mifepristone should consultwith their endocrinologist. Theirendocrinologist, in turn, should contact Corcept for information about thecompassionate use program. Please notethat Corcept will provide information solely to physicians. Toll Free: 1-877-367-6550 Website: www.corcept.com/cushings_expanded_access E-mail: EAP@Corcept.com (Edited/changed at 8:54 PM EST by Dr. F's request. He sent another which changes the wording a tiny bit.) This post has been promoted to an article

XOXO, Dianne... I care. Robin

Hi, Cindy....If anyone will know it's Kristy. I do have this article in my files, though: http://jcem.endojournals.org/cgi/reprint/9...1340.pdf?ck=nck Bottom line.... " We conclude that short-term therapy with pioglitazone [Actos] therapy is unlikely to modulate the HPA axis in subjects with Cushing's disease. However, further studies with more potent PPAR agonists for longer durations of treatment may be warranted."

Hi.... I agree with Susan. THere is actually quite a bit of research out there, and new coming every day. But do doctors read it? No. That's the big problem. If you click on the links in my signature, you'll see just a few of the resources from research that are out there. Hugs, Robin

Well, I'm glad I got my large blue bands!! Thanks for the prompt delivery, Mary!! Hugs! Robin

Family's Despair over Rare Disease Exclusive By Benjamin Parkes THE family of a Chippenham man who died of a rare hormonal disorder have told of the despair his illness caused before it was diagnosed. An inquest held in Flax Bourton on Tuesday ruled that John Goacher, 51, of Stonelea Close, died of natural causes on May 18 last year, after having surgery at Frenchay Hospital in Bristol. The operation was intended to ease the symptoms of Cushing's Disease, which included obesity, a rounded face, increased fat around the neck and thinning arms and legs. Cushing's is a disorder that floods the body with the cortisol hormone. It affects 10 in every million people each year. Most people affected are between 20 and 50 years old. It gave Mr Goacher high blood pressure, diabetes, muscle weakness and osteoporosis and also reduced his life expectancy to a matter of years if left untreated. But it was the psychological problems set off by the disease that caused the most anxiety. Before Cushing's Disease caused a raft of psychological problems, Mr Goacher was a senior reliability engineer for a top secret Government agency and used to travel to London to advise Government scientists on missile weapons. His wife Linda said: "John's personality completely changed and he did some very strange and destructive things. "We did not get much help or sympathy at first because we did not know that it was Cushing's. "His friends and family thought he was being deliberately troublesome and it put a great deal of stress on our family and friends. "He had violent episodes, smashing down doors and wrecking things, and was eventually sectioned because of his mental problems. "He used to say he felt like he was in a bubble where everything he did inside it seemed to be normal but to everyone outside the bubble he appeared to be losing his mind. "I did some research on the internet and discovered that Cushing's might be at the root of it and after a lot of pressure we finally got John referred." Mr Goacher was eventually diagnosed with a particularly aggressive form of the debilitating disease in February last year. He then had to face the stress of risky surgery to the malfunctioning pituitary gland inside Mr Goacher's skull. The operation performed by consultant neurosurgeon Richard Nelson initially yielded positive results but within days Mr Goacher's health took a turn for the worst. Speaking at the inquest, deputy coroner Anthony Woodburn said: "Without the operation Mr Goacher's life would have come to a distressing end quite quickly. "An infection occurred in his pituitary gland after surgery which cause the massive bleeding and subsequent heart attack that led to his death. "The underlying cause of this was an aggressive form of Cushing's Disease from which all the other problems stemmed." Mrs Goacher said: "I can't help feeling that so much pain could have been avoided if John had been diagnosed earlier." 7:34am Friday 27th April 2007

MaryO, what if you take "pre-orders" for the magnetic ribbons? How many would you need from us to make up one order? We could pay you ahead of time for them. Could we use the PayPal site to do it and email you to let you know that's what we are doing? I'd like to order several myself. Hugs! Robin

Hi, Barb.... According to the research I've read, it's the cortisol that makes us night owls...we don't make the cortisol different because we are. I've posted a lot about the variation in diurnal rhythm and if you do a search with "diurnal" you'll see a lot. If you do another search with "circadian", you'll find other things. Hugs! Robin

Lots of good information! However, it's a very conservative diagnosis site/chart, so be wary. For instance, if one suppresses on the dex, it automatically rules out Cushing's. No salivaries are mentioned, no 10 hour UFC's, and late-night serums aren't really mentioned, either. It does an excellent job of explaing the types of tests and how they are used. And as someone else mentioned, especially good talking about finding WHERE a tumor is once one is diagnosed. Hugs!! Robin

For those of you who have high levels of ACTH, this article may explain some things that are going on: Increased ERK phosphorylation in the adrenal gland in response to chronic ACTH treatment Full article available temporarily.

Hi! I've missed a lot of posts lately, too, so I haven't seen this elsewhere. This is VERY INTERESTING!! Thank you for sharing it. Hugs!! Robin

I'm with Dawn.... How'd they know what was what? I'm glad my eyes will be covered.... (I know...I know...I'll be out) Thanks, MaryO!! Robin

Excellent article! It is an ugly disease. Not so much for what it makes us look like, but for what it does to our lives and the difficulties of diagnosis. This was well-written. The author took some time to get good information. Thanks, Mary!! Robin

http://www.jstage.jst.go.jp/article/endocr...0609250041/_pdf

Well, well, well............ Hugs!! Robin

I got a response already!!