ūü¶ď Day 1: Cushing’s Awareness Challenge 2022

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.

 


April Fool's Day

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!

Basics: Meds – Isturisa

Cushing’s disease is a progressive pituitary disorder in which there is an excess of cortisol in the body. While the disease can be treated surgically, this option is not possible for all patients. This is one of the approved medications that assist in controlling cortisol levels in people with Cushing’s disease.

sturisa was approved in 2020 to treat adults with Cushing’s disease for whom pituitary surgery is ineffective or not an option. The oral medication works by inhibiting an enzyme called 11-beta-hydroxylase, which is involved in cortisol production.

Isturisa, also known as osilodrostat or LCI699, is an approved treatment originally developed by Novartis, but now acquired by Recordati to treat people with Cushing’s disease, a condition in which a pituitary tumor causes the body to produce excessive levels of the stress hormone cortisol.

In 2020, the U.S. Food and Drug Administration (FDA) approved Isturisa to treat adults with Cushing’s disease for whom pituitary surgery was not an option, or ineffective.

Earlier that same year, the European Commission (EC) approved Isturisa to treat people with endogenous Cushing’s syndrome. The medication also was approved for the same indication in Japan in 2021.

How does Isturisa work?

Isturisa is an oral medicine that inhibits an enzyme called 11-beta-hydroxylase, which is involved in cortisol production. Blocking the activity of this enzyme prevents excessive cortisol production, normalizing the levels of the hormone in the body and easing the symptoms of Cushing’s disease.

Isturisa in clinical trials

A Phase 2 clinical trial (NCT01331239) investigated the safety and efficacy of Isturisa as a Cushing’s disease treatment. The trial that concluded in October 2019 initially was named LINC-1, but, through a study protocol amendment, patients who completed the study could continue into a second phase called LINC-2.

The company¬†published findings¬†that covered both patient groups in the journal¬†Pituitary. Data showed that Isturisa reduced cortisol levels in the urine of all patients by week 22. Urine cortisol levels reached and remained within a normal range in 79% of the patients by then. Common adverse effects included nausea, diarrhea, lack of energy, and adrenal insufficiency ‚ÄĒ a condition in which the adrenal glands are unable to produce enough hormones.

A Phase 3 clinical trial (NCT02180217) called LINC-3 also assessed the safety and efficacy of Isturisa in 137 patients with Cushing’s disease (77% female, median age 40 years). Participants were given Isturisa for 26 weeks, with efficacy-based dose adjustments during the first 12 weeks.

Then, the 71 participants with a complete response (those whose urine cortisol levels were within normal limits) at week 26 and who did not require a dose increase after week 12, were assigned randomly to either continue treatment with Isturisa or switch to a placebo.

After this 34-week period, 86% of Isturisa-treated patients had normal urinary cortisol levels, as compared to 29% of participants given placebo. All participants then were given Isturisa for an additional 12 weeks. At the end of the 48-week study, 66% of participants had normal urine cortisol levels.

Results from LINC-3 formed the basis for regulatory approvals of Isturisa. Common adverse side effects in the trial included nausea, headache, fatigue, and adrenal insufficiency.

A multi-center, randomized, double-blind, placebo-controlled Phase 3 trial (NCT02697734) called LINC-4 further confirmed the safety and efficacy of Isturisa as a Cushing’s disease therapy. During the trial, patients received Isturisa or a placebo through a 12-week period followed by treatment with Isturisa until week 48.

Top-line results showed that 77% of patients on Isturisa experienced a complete response after the 12-week randomized period, as compared to 8% of those on placebo. No new safety data were noted.

A roll-over, worldwide Phase 2 study (NCT03606408) is recruiting patients who have successfully completed any of the previous clinical trials. Patients can continue to take the dosage they received during the initial trial. The aim of this study is to assess the long-term effects of Isturisa for up to five years.

ūü¶ď Day 1: Cushing’s Awareness Challenge 2020

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.

 


April Fool's Day

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!

ūüé§ Archived Interview: Heather S, Pituitary Cushing’s Survivor

 

Heather, pituitary surgery on January 18, 2006 after years of medical problems, June 5, 7:30PM

 

Listen at http://www.blogtalkradio.com/cushingshelp/2008/06/05/interview-with-heather-s-pituitary-cushings-survivor

 

HOME | Sitemap | Abbreviations | Adrenal Crisis! | Glossary | Forums | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

ūü¶ď 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!

ūüé§ Archived Interview with Heather S, Pituitary Cushing’s Survivor

 

Heather, pituitary surgery on January 18, 2006 after years of medical problems, June 5, 7:30PM

 

Listen at http://www.blogtalkradio.com/cushingshelp/2008/06/05/interview-with-heather-s-pituitary-cushings-survivor

 

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

ūü¶ď Day 1: Cushing’s Awareness Challenge 2018

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.


April Fool's Day

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!

Interview with Heather S, Pituitary Cushing’s Survivor

 

Heather, pituitary surgery on January 18, 2006 after years of medical problems, June 5, 7:30PM

 

Listen at http://www.blogtalkradio.com/cushingshelp/2008/06/05/interview-with-heather-s-pituitary-cushings-survivor

 

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Day 1: Cushing’s Awareness Challenge 2017

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.


April Fool's Day

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!