⁉️ What’s on *Your* Medical ID?

You do have one, right???

I loved the one that Natalie had and, after her death, I bought the same style as a way to honor her memory.

There’s room for 5 lines on there – not enough for everything but enough to get me through an emergency…and I have had some.

 

 

There’s also a line with my info number so when the EMTs call the tollfree number, they can get right to my complete info.

So – what do you have on yours?  Please share!

😷 Clinical Trial: Endogenous Cushing’s Syndrome Patients Sought for Phase 3 Trial Testing Relacorilant

Corcept Therapeutics is recruiting participants for its Phase 3 clinical trial evaluating relacorilant as a potential treatment for Cushing’s syndrome-related side effects such as high blood pressure and impaired glucose tolerance.

Also, findings from the study “A Randomized-Withdrawal, Placebo-Controlled, Phase 3 Study to Assess the Efficacy and Safety of Selective Glucocorticoid Receptor Antagonist, Relacorilant, in Patients with Cushing Syndrome (GRACE Study),” were presented at the 2019 Annual Meeting of the Endocrine Society (ENDO), in New Orleans, Louisiana.

In endogenous Cushing’s syndrome there is an “internal” culprit — usually a benign tumor — that makes the body produce too much of the hormone cortisol. The excessive amount of circulating cortisol can lead to serious problems, such as type 2 diabetes and high blood pressure.

Relacorilant is designed to prevent the effects of excess cortisol by blocking one of its receptors, the glucocorticoid receptor. Results from a Phase 2 trial (NCT02804750) suggest that relacorilant may manage the effects of prolonged cortisol excess in Cushing’s patients faster and without the known side effects of approved medications like Korlym (mifepristone).

Also, the treatment improved glucose tolerance and improved blood pressure in patients, suggesting it could be used to treat those with endogenous Cushing’s syndrome and concurrent type 2 diabetes mellitus, impaired glucose tolerance, and/or uncontrolled high blood pressure (hypertension).

Corcept has now designed the GRACE Phase 3 trial (NCT03697109), a multicenter, double-blind, placebo-controlled, randomized-withdrawal study, to evaluate relacorilant’s safety and effectiveness in these patients.

GRACE will be conducted in two stages. First, all patients will be given oral relacorilant each day for 22 weeks, at doses rising from 100 mg to a maximum of 400 mg.

Those who complete that stage and show improvements in pre-specified parameters of glucose tolerance or hypertension will move into the second, randomized phase of the trial.

Here, they will be randomly assigned to placebo or relacorilant at the same dose they received at the end of the first stage. This new round of treatment will last 12 weeks. Treatment-related adverse events (side effects) also will be assessed for up to 48 weeks (about 11 months) as a main outcome.

Additional primary goals include changes in glucose tolerance and blood pressure between the end of the first and second stages of the study.

Secondary objectives include identifying the proportion of patients achieving a response in glucose tolerance and high blood pressure criteria and the proportion of those who worsened at the end of the first stage, and the changes in quality of life throughout the study.

Researchers plan to enroll 130 people in these U.S. cities: Indianapolis, Indiana; Metairie, Louisiana; Jackson, Mississippi; Albany, New York; Jamaica, New York; Wilmington, North Carolina; Miami, Florida; Summerville, South Carolina; El Paso, Texas; Oklahoma City, Oklahoma, and; Aurora, Colorado. More detailed information is available here.

“We look forward to presenting new findings concerning cortisol modulation in patients with hypercortisolism,” Joseph K. Belanoff, MD, Corcept’s CEO,  said in a press release.

❓Can You Help? Newbie Question about CBD Oil

This is on the message boards at http://cushings.invisionzone.com/tags/help%20to%20lower%20cortisol%3F/. If you can’t access it, respond here and I’ll share.

I would like to know if anybody has tried CBD oils to lower their cortisol levels? I have asked my Dr but he isn’t knowledgeable about whether CBD oils are useful for lowering cortisol levels. If anybody has tried them or has any information on there use in this field I would be interested in find…

 

🎤 Archived Interview: Symptoms and Diagnosis: Cushing’s Message Board Members

As part of this year’s Cushing’s Awareness Challenge, I’ve decided to share our Interview Series again since there was lots of great info in there.

The series is still going on, so if you’d like to be a part of this, just let me know.  You can fill out this form and check off that you want to do an interview – Add Your Bio

There are currently 89 interviews in our series.  This is the second one:

 

Robin Smith (staticnrg) hosted as Cushing’s message board members called in to talk about their fight for diagnosis and treatment. Robin opened the show with a brief explanation of what Cushing’s is and what the symptoms are.

Listen at http://www.blogtalkradio.com/cushingshelp/2008/01/10/cushings-members

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🦓 Day 1: Cushing’s Awareness Challenge 2019

April is always Cushing’s Awareness Challenge month because Dr. Harvey Cushing was born on April 8th, 1869.

30-posts

Thanks to Robin for this wonderful past logo!  I’ve participated in these 30 days for Cushing’s Awareness several times so I’m not quite sure what is left to say this year but I always want to get the word out when I can.

As I see it, there have been some strides the diagnosis or treatment of Cushing’s since last year.  More drug companies are getting involved, more doctors seem to be willing to test, a bit more awareness, maybe.


 

How fitting that this challenge should begin on April Fool’s Day.  So much of Cushing’s  Syndrome/Disease makes us Cushies seem like we’re the April Fool.  Maybe, just maybe, it’s the doctors who are the April Fools…

Doctors tell us Cushing’s is too rare – you couldn’t possibly have it.  April Fools!

All you have to do is exercise and diet.  You’ll feel better.  April Fools!

Those bruises on your legs?  You’re just clumsy. April Fools!

Sorry you’re growing all that hair on your chin.  That happens as you age, you know.  April Fools!

Did you say you sleep all day?  You’re just lazy.  If you exercised more, you’d have more energy. April Fools!

You don’t have stretch marks.  April Fools!

You have stretch marks but they are the wrong [color/length/direction] April Fools!

The hump on the back of your neck is from your poor posture. April Fools!

Your MRI didn’t show a tumor.  You couldn’t have Cushing’s. April Fools!

This is all in your mind.  Take this prescription for antidepressants and go home.  April Fools!

If you have this one surgery, your life will get back to normal within a few months. April Fools!

What?  You had transsphenoidal surgery for Cushing’s?  You wasted your time and money. April Fools!

I am the doctor.  I know everything.  Do not try to find out any information online. You could not have Cushing’s.  It’s too rare…  April FOOL!

All this reminds me of a wonderful video a message board member posted a while ago:

So now – who is the April Fool?  It wasn’t me.  Don’t let it be you, either!

✏️ It’s Time to Sign Up for the Cushing’s Awareness Challenge 2019

I plan to do the Cushing’s Awareness Challenge again. Last year’s info is here:  https://cushieblogger.com/2018/03/11/time-to-sign-up-for-the-cushings-awareness-challenge-2018/

The original page is getting very slow loading, so I’ve moved my own posts to this newer blog.

As always, anyone who wants to join me can share their blog URL with me and I’ll add it to the links on the right side, so whenever a new post comes up, it will show up automatically.

If the blogs are on WordPress, I try to reblog them all to get even more exposure on the blog, on Twitter and on Facebook at Cushings Help Organization, Inc.  If you have photos, and you give me permission, I’ll add them to the Pinterest page for Cushing’s Help.


The Cushing’s Awareness Challenge is almost upon us again!
Do you blog? Want to get started?
Since April 8 is Cushing’s Awareness Day, several people got their heads together to create the Eighth Annual Cushing’s Awareness Blogging Challenge.
All you have to do is blog about something Cushing’s related for the 30 days of April.
There will also be a logo for your blog to show you’ve participated.
Please let me know the URL to your blog in the comments area of this post, on the Facebook page, in one of the Cushing’s Help Facebook Groups, on the message boards or an email  and I will list it on CushieBloggers (  http://cushie-blogger.blogspot.com/ )
The more people who participate, the more the word will get out about Cushing’s.
Suggested topics – or add your own!
  • In what ways have Cushing’s made you a better person?
  • What have you learned about the medical community since you have become sick?
  • If you had one chance to speak to an endocrinologist association meeting, what would you tell them about Cushing’s patients?
  • What would you tell the friends and family of another Cushing’s patient in order to garner more emotional support for your friend? challenge with Cushing’s? How have you overcome challenges? Stuff like that.
  • I have Cushing’s Disease….(personal synopsis)
  • How I found out I have Cushing’s
  • What is Cushing’s Disease/Syndrome? (Personal variation, i.e. adrenal or pituitary or ectopic, etc.)
  • My challenges with Cushing’s
  • Overcoming challenges with Cushing’s (could include any challenges)
  • If I could speak to an endocrinologist organization, I would tell them….
  • What would I tell others trying to be diagnosed?
  • What would I tell families of those who are sick with Cushing’s?
  • Treatments I’ve gone through to try to be cured/treatments I may have to go through to be cured.
  • What will happen if I’m not cured?
  • I write about my health because…
  • 10 Things I Couldn’t Live Without.
  • My Dream Day.
  • What I learned the hard way
  • Miracle Cure. (Write a news-style article on a miracle cure. What’s the cure? How do you get the cure? Be sure to include a disclaimer)
  • Give yourself, your condition, or your health focus a mascot. Is it a real person? Fictional? Mythical being? Describe them. Bonus points if you provide a visual!
  • 5 Challenges & 5 Small Victories.
  • The First Time I…
  • Make a word cloud or tree with a list of words that come to mind when you think about your blog, health, or interests. Use a thesaurus to make it branch more.
  • How much money have you spent on Cushing’s, or, How did Cushing’s impact your life financially?
  • Why do you think Cushing’s may not be as rare as doctors believe?
  • What is your theory about what causes Cushing’s?
  • How has Cushing’s altered the trajectory of your life? What would you have done? Who would you have been
  • What three things has Cushing’s stolen from you? What do you miss the most? What can you do in your Cushing’s life to still achieve any of those goals?
  • What new goals did Cushing’s bring to you?
  • How do you cope?
  • What do you do to improve your quality of life as you fight Cushing’s?
  • How Cushing’s affects children and their families
  • Your thoughts…?
maryo colorful zebra

❓Do You Use Mario Badescu Skin Care Products?

Thirty-one former customers have filed suit in New Jersey State Court against Mario Badescu, Inc., a skincare company based out of Edison, New Jersey, and Mario Badescu Skin Care, Inc., a skincare salon in New York.

The plaintiffs allege that they were injured by potent and undisclosed steroids in two of Mario Badescu’s face creams, Control Cream, and Healing Cream, which were marketed as products that contained only “botanical” active ingredients that were safe for daily use. The complaint alleges that contrary to what Mario Badescu told the public, Control Cream and Healing Cream contained two steroids: hydrocortisone and triamcinolone acetonide. The complaint also alleges that Mario Badescu’s products contained higher than prescription-strength doses of triamcinolone acetonide. Both steroids pose serious health risks to both the skin and the body’s adrenal system.

The plaintiffs were unaware of the steroids in Mario Badescu’s products and used the products on their faces, usually daily, for as long as fourteen years. Many of the plaintiffs allege that they unwittingly became addicted to the steroids such that even a day without use of the Products caused severe and painful withdrawal reactions. Moreover, many of the plaintiffs allege that they suffered from steroid-related ailments while using Control Cream or Healing Cream, including cataracts, glaucoma, mood disorders, heart issues, elevated cortisol levels, adrenal system suppression and Cushing’s Syndrome. Plaintiffs allege that because they did not know they were using steroids at the time, they were unable to inform their physicians about the true source of their injuries and were repeatedly misdiagnosed by their medical providers.

“Mario Badescu secretly added an addictive prescription steroid to its cosmetic face creams, then told its customers that the creams were safe for daily use,” Plaintiffs’ counsel, Gary E. Mason said. “Our clients suffered devastating injuries as a result of this deception,” Mason added.

The plaintiffs are represented by John C. Whitfield, Gary E. Mason, Esfand Nafisi, and Caroline Ramsey Taylor of Whitfield Bryson & Mason LLP, and Michael Galpern, Andrew Bell and Janet Walsh of Locks Law Firm, LLC. For more information about the lawsuit, contact the firm by phone at (202)640-1167.

The name of the case is Restaino et al. v. Mario Badescu, Inc. et al., No. MID-L-5830-14 (N.J. Super. Ct. Law Div., filed Sept. 25, 2014).

See us on WTVH/WEHT Evansville! “Tristate Law Firm Takes On Major Cosmetics Company