Jump to content

Search the Community

Showing results for tags 'Cushings'.

  • Search By Tags

    Type tags separated by commas.
  • Search By Author

Content Type


Forums

  • Welcome!
    • Introduce Yourself
    • Guest Questions
    • Cushing's Basics
    • News Items and Research
    • Announcements
    • Questions about how these boards work?
  • Get Active!
    • Meetings, events and information
    • Fundraising Ideas
    • Cushing's Awareness Day, April 8
    • Spread the Word
    • Marathons
    • Cushing's Clothes Closet
    • Cushing's Library
    • Cushing's Store
  • Cushing's
    • Resources
    • Types of Cushing's
    • Symptoms
    • Tests
    • Treatments
  • Miscellaneous
    • Other Diseases
    • Good News / Attitude of Gratitude
    • Inspirational / Motivational
    • Quotes and Affirmations
    • Lighten Up!
    • Word Games
    • Miscellaneous Chit Chat
    • Current Events
    • Cushie Commerce
    • Internet Classes
    • Recipes

Blogs

  • MaryO'Blog
  • Christy Smith's Blog
  • rooon55's Blog
  • LLMart's Blog
  • regina from florida's Blog
  • terri's Blog
  • Canasa's Blog
  • Tberry's Blog
  • LisaMK's Blog
  • diane177432's Blog
  • Jen1978's Blog
  • GreenGal's Blog
  • Yada Yada Yada
  • Jinxie's Blog
  • SherryC's Blog
  • stjfs' Blog
  • kalimae7371's Blog
  • Kristy's Blog
  • kathieb1's Blog
  • Yavanna's Blog
  • Johnni's Blog
  • AutumnOMA's Blog
  • Will Power
  • dropsofjupiter's Blog
  • Lorrie's Blog
  • DebMV's Blog
  • FarWind's Blog
  • sallyt's Blog
  • dseefeldt's Blog
  • ladylena's Blog
  • steffie's Blog
  • Lori L's Blog
  • mysticalsusan1's Blog
  • cathy442's Blog
  • Kathy711's Blog
  • Shannonsmom's Blog
  • jack's Blog
  • Kandy66's Blog
  • mars72's Blog
  • singlesweetness33's Blog
  • michelletm's Blog
  • JC_Adair's Blog
  • Lisa-A's Blog
  • Jen3's Blog
  • tammi's Blog
  • Ramblin' Rose (Maggie's)
  • monicaroni77's Blog
  • monicaroni's Blog
  • Saz's Blog
  • alison
  • Thankful for the Journey
  • Judy from Pgh's Blog
  • Addiegirl's Blog
  • candlelite2000's Blog
  • Courtney likes to talk......
  • Tanya's Blog
  • smoketooash's Blog
  • meyerfamily8's Blog
  • Sheila1366's Blog
  • A Guide to Blogging...
  • Karen's Blog
  • barbj222222's Blog
  • Amdy's Blog
  • Jesh's Blog
  • pumpkin's Blog
  • Jazlady's Blog
  • Cristalrose's Blog
  • kikicee's Blog
  • bordergirl's Blog
  • Shelby's Blog
  • terry.t's Blog
  • CanadianGuy's Blog
  • Mar's Cushie Couch
  • leanne's Blog
  • honeybee30's Blog
  • cat lady's Blog
  • Denarea's Blog
  • Caroline's Blog
  • NatalieC's Blog
  • Ahnjhnsn's Blog
  • A journey around my brain!
  • wisconsin's Blog
  • sonda's Blog
  • Siobhan2007's Blog
  • mariahjo's Blog
  • garcia9's Blog
  • Jessie's Blog
  • Elise T.'s Blog
  • glandular-mass' Blog
  • Rachel Bridgewater's Blog
  • judycolby's Blog
  • CathyM's Blog
  • MelissaTX's Blog
  • nessie21's Blog
  • crzycarin's Blog
  • Drenfro's Blog
  • CathyMc's Blog
  • joanna27's Blog
  • Just my thoughts!
  • copacabana's Blog
  • msmith3033's Blog
  • EyeRishGrl's Blog
  • SaintPaul's Blog
  • joyce's Blog
  • Tara Lou's Blog
  • penybobeny's Blog
  • From Where I Sit
  • Questions..
  • jennsarad's Blog
  • looking4answers2's Blog
  • julie's blog
  • cushiemom's Blog
  • greydragon's Blog
  • AmandaL's Blog
  • KWDesigns: My Cushings Journey
  • cushieleigh's Blog
  • chelser245's Blog
  • melissa1375's Blog
  • MissClaudie's Blog
  • missclaudie92's Blog
  • EEYORETJBD's Blog
  • Courtney's Blog
  • Dawn's Blog
  • Lindsay's Blog
  • rosa's Blog
  • Marva's Blog
  • kimmy's Blog
  • Cheryl's Blog
  • MissingMe's Blog
  • FerolV's Blog
  • Audrey's (phil1088) Blog
  • sugarbakerqueen's Blog
  • KathyBair's Blog
  • Jenn's Blog
  • LisaE's Blog
  • qpdoll's Blog
  • blogs_blog_140
  • beach's Blog
  • Reillmommy is Looking for Answers...
  • natashac's Blog
  • Lisa72's Blog
  • medcats10's Blog
  • KaitlynElissa's Blog
  • shygirlxoxo's Blog
  • kerrim's Blog
  • Nicki's Blog
  • MOPPSEY's Blog
  • Betty's Blog
  • And the beat goes on...
  • Lynn's Blog
  • marionstar's Blog
  • floweroscotland's Blog
  • SleepyTimeTea's Blog
  • Shelly3's Blog
  • fatnsassy's Blog
  • gaga's Blog
  • Jewels' Blog
  • SusieQ's Blog
  • kayc6751's Blog
  • moonlight's Blog
  • Sick of Being Sick
  • Peggy's Blog
  • kouta5m's Blog
  • TerryC's Blog
  • snowii's Blog
  • azZ9's Blog
  • MaMaT333's Blog
  • missaf's Blog
  • libertybell's Blog
  • LyssaFace's Blog
  • suzypar2002's Blog
  • Mutley's Blog
  • superc's Blog
  • lisajo42's Blog
  • alaustin's Blog
  • Tina1962's Blog
  • Ill never complain a single word about anything.. If I get rid of Cushings disease.
  • puddingtoast's Blog
  • AmberC's Blog
  • annacox
  • justwaiting's Blog
  • RachaelB's Blog
  • MelanieW's Blog
  • My Blog
  • FLHeather's Blog
  • HollieK's Blog
  • Bonny777's Blog
  • KatieO's Blog
  • LilDickens' Mini World
  • MelissaG's Blog
  • KelseyMichelle's Blog
  • Synergy's Blog
  • Carolyn1435's Blog
  • Disease is ugly! Do I have to be?
  • A journey of a thousand miles begins with a single wobble
  • MichelleK's Blog
  • lenalee's Blog
  • DebGal's Blog
  • Needed Answers
  • Dannetts Blog
  • Marisa's Blog
  • Is this cushings?
  • alicia26's Blog
  • happymish's Blog
  • mileymo's Blog
  • It's a Cushie Life!
  • The Weary Zebra
  • mthrgonenuts' Blog
  • LoriW's Blog
  • WendyG's Blog
  • khmood's Blog
  • Finding Answers and Pissing Everyone Off Along the Way
  • elainewwjd's Blog
  • brie's Blog
  • dturner242's Blog
  • dturner242's Blog
  • dturner242's Blog
  • Stop the Violins
  • FerolV's Internal Blog
  • beelzebubble's Blog
  • RingetteLUVR
  • Eaglemtnlake's Blog
  • mck25's Blog
  • vicki11's Blog
  • vicki11's Blog
  • ChrissyL's Blog
  • tpatterson757's Blog
  • Falling2Grace's Blog
  • meeks089's Blog
  • JustCurious' Blog
  • Squeak's Blog
  • Kill Bill
  • So It Begins ! Cushings / Pituitary Microadenoma
  • Crystal34's Blog
  • Janice Barrett

Categories

  • Helpful Articles
    • Links
    • Research and News
    • Useful Information
  • Pages
  • Miscellaneous
    • Databases
    • Templates
    • Media

Find results in...

Find results that contain...


Date Created

  • Start

    End


Last Updated

  • Start

    End


Filter by number of...

Joined

  • Start

    End


Group


AIM


MSN


Website URL


ICQ


Yahoo


Jabber


Skype


Location


Interests

  1. Highlights • There is a highs suspicion of acute pancreatitis complications for patients with Cushing syndrome. • Corticosteroids are a common cause for both Cushing syndrome and acute pancreatitis. • There are many common etiologies between Cushing syndrome and acute pancreatitis. • Cushing syndrome is a risk factor of acute pancreatitis, need further detailed studies. Abstract Introduction Cushing's syndrome (CS) is a rare and severe disease. Acute pancreatitis is the leading cause of hospitalization. The association of the two disease is rare and uncommon. We report the case of a 37-year-old woman admitted in our service for acute pancreatitis and whose Cushing syndrome was diagnosed during hospitalisation. The aim of this work is to try to understand the influence of de Cushing in acute pancreatitis and to establish a causative relationship between the two diseases. Observation It is a 37-year-old woman with a history of corticosteroid intake for six months, stopped three months ago who consulted for epigastralgia and vomiting. The physical exam found epigastric sensitivity with Cushing syndrome symptoms. A CT scan revealed acute edematous-interstitial pancreatitis stage E of Balthazar classification. 24 h free cortisol of 95 μg/24 h and cortisolemia of 3.4 μg/dl. The patient was treated symptomatically and referred after to endocrinology service for further treatment. Conclusion The association with acute pancreatitis and CS is rare and uncommon. Although detailed studies and evidence are lacking, it can therefore be inferred that CS is one of the risk factors for the onset of acute pancreatitis. The medical treatment and management of acute pancreatitis in those patients do not differ from other pancreatitis of any etiologies. Read the article here.
  2. A young healthcare worker who contracted COVID-19 shortly after being diagnosed with Cushing’s disease was detailed in a case report from Japan. While the woman was successfully treated for both conditions, Cushing’s may worsen a COVID-19 infection. Prompt treatment and multidisciplinary care is required for Cushing’s patients who get COVID-19, its researchers said. The report, “Successful management of a patient with active Cushing’s disease complicated with coronavirus disease 2019 (COVID-19) pneumonia,” was published in Endocrine Journal. Cushing’s disease is caused by a tumor on the pituitary gland, which results in abnormally high levels of the stress hormone cortisol (hypercortisolism). Since COVID-19 is still a fairly new disease, and Cushing’s is rare, there is scant data on how COVID-19 tends to affect Cushing’s patients. In the report, researchers described the case of a 27-year-old Japanese female healthcare worker with active Cushing’s disease who contracted COVID-19. The patient had a six-year-long history of amenorrhea (missed periods) and dyslipidemia (abnormal fat levels in the body). She had also experienced weight gain, a rounding face, and acne. After transferring to a new workplace, the woman visited a new gynecologist, who checked her hormonal status. Abnormal findings prompted a visit to the endocrinology department. Clinical examination revealed features indicative of Cushing’s syndrome, such as a round face with acne, central obesity, and buffalo hump. Laboratory testing confirmed hypercortisolism, and MRI revealed a tumor in the patient’s pituitary gland. She was scheduled for surgery to remove the tumor, and treated with metyrapone, a medication that can decrease cortisol production in the body. Shortly thereafter, she had close contact with a patient she was helping to care for, who was infected with COVID-19 but not yet diagnosed. A few days later, the woman experienced a fever, nausea, and headache. These persisted for a few days, and then she started having difficulty breathing. Imaging of her lungs revealed a fluid buildup (pneumonia), and a test for SARS-CoV-2 — the virus that causes COVID-19 — came back positive. A week after symptoms developed, the patient required supplemental oxygen. Her condition worsened 10 days later, and laboratory tests were indicative of increased inflammation. To control the patient’s Cushing’s disease, she was treated with increasing doses of metyrapone and similar medications to decrease cortisol production; she was also administered cortisol — this “block and replace” approach aims to maintain cortisol levels within the normal range. The patient experienced metyrapone side effects that included stomach upset, nausea, dizziness, swelling, increased acne, and hypokalemia (low potassium levels). She was given antiviral therapies (e.g., favipiravir) to help manage the COVID-19. Additional medications to prevent opportunistic fungal infections were also administered. From the next day onward, her symptoms eased, and the woman was eventually discharged from the hospital. A month after being discharged, she tested negative for SARS-CoV-2. Surgery for the pituitary tumor was then again possible. Appropriate safeguards were put in place to protect the medical team caring for her from infection, during and after the surgery. The patient didn’t have any noteworthy complications from the surgery, and her cortisol levels soon dropped to within normal limits. She was considered to be in remission. Although broad conclusions cannot be reliably drawn from a single case, the researchers suggested that the patient’s underlying Cushing’s disease may have made her more susceptible to severe pneumonia due to COVID-19. “Since hypercortisolism due to active Cushing’s disease may enhance the severity of COVID-19 infection, it is necessary to provide appropriate, multidisciplinary and prompt treatment,” the researchers wrote. From https://cushingsdiseasenews.com/2021/01/15/covid-19-may-be-severe-cushings-patients-case-report-suggests/?cn-reloaded=1
  3. Dr. Theodore Friedman (The Wiz) will host a webinar on Growth Hormone Deficiency, PCOS or Cushing’s: How do You Tell Them Apart? Dr. Friedman will discuss topics including: Signs and Symptoms of Cushing’s Syndrome Testing for Cushing’s Signs and Symptoms of Growth Hormone Deficiency Testing for Growth Hormone Deficiency Signs and Symptoms of PCOS Testing for PCOS How do you tell them apart? Sunday • August 2 • 6 PM PDT Click here on start your meeting or https://axisconciergemeetings.webex.com/axisconciergemeetings/j.php?MTID=m4eda0c468071bd2daf33e6189aca3489 OR Join by phone: (855) 797-9485 Meeting Number (Access Code): 133 727 0164 Your phone/computer will be muted on entry. Slides will be available on the day of the talk here There will be plenty of time for questions using the chat button. Meeting Password: pcos For more information, email us at mail@goodhormonehealth.com
  4. Braun LT, Fazel J, Zopp S Journal of Bone and Mineral Research | May 22, 2020 This study was attempted to assess bone mineral density and fracture rates in 89 patients with confirmed Cushing's syndrome at the time of diagnosis and 2 years after successful tumor resection. Researchers ascertained five bone turnover markers at the time of diagnosis, 1 and 2 years postoperatively. Via chemiluminescent immunoassays, they assessed bone turnover markers osteocalcin, intact procollagen‐IN‐propeptide, alkaline bone phosphatase, CrossLaps, and TrAcP 5b in plasma or serum. For comparison, they studied 71 gender‐, age‐, and BMI‐matched patients in whom Cushing's syndrome had been excluded. The outcomes of this research exhibit that the phase immediately after surgical remission from endogenous CS is defined by a high rate of bone turnover resulting in a striking net increase in bone mineral density in the majority of patients. Read the full article on Journal of Bone and Mineral Research.
  5. With the novel COVID-19 virus continuing to spread, it is crucial to adhere to the advice from experts and the Centers for Disease Control and Prevention (CDC) to help reduce risk of infection for individuals and the population at large. This is particularly important for people with adrenal insufficiency and people with uncontrolled Cushing’s Syndrome. Studies have reported that individuals with adrenal insufficiency have an increased rate of respiratory infection-related deaths, possibly due to impaired immune function. As such, people with adrenal insufficiency should observe the following recommendations: Maintain social distancing to reduce the risk of contracting COVID-19 Continue taking medications as prescribed Ensure appropriate supplies for oral and injectable steroids at home, ideally a 90-day preparation In the case of hydrocortisone shortages, ask your pharmacist and physician about replacement with different strengths of hydrocortisone tablets that might be available. Hydrocortisone (or brand name Cortef) tablets have 5 mg, 10 mg or 20 mg strength In cases of acute illness, increase the hydrocortisone dose per instructions and call the physician’s office for more details Follow sick day rules for increasing oral glucocorticoids or injectables per your physician’s recommendations In general, patients should double their usual glucocorticoid dose in times of acute illness In case of inability to take oral glucocorticoids, contact your physician for alternative medicines and regimens If experiencing fever, cough, shortness of breath or other symptoms, call both the COVID-19 hotline (check your state government website for contact information) and your primary care physician or endocrinologist Monitor symptoms and contact your physician immediately following signs of illness Acquire a medical alert bracelet/necklace in case of an emergency Individuals with uncontrolled Cushing’s Syndrome of any origin are at higher risk of infection in general. Although information on people with Cushing’s Syndrome and COVID-19 is scarce, given the rarity of the condition, those with Cushing’s Syndrome should strictly adhere to CDC recommendations: Maintain social distancing to reduce the risk of contracting COVID-19 If experiencing fever, cough, shortness of breath or other symptoms, call both the COVID-19 hotline (check your state government website for contact information) and your primary care physician or endocrinologist In addition, people with either condition should continue to follow the general guidelines at these times: Stay home as much as possible to reduce your risk of being exposed When you do go out in public, avoid crowds and limit close contact with others Avoid non-essential travel Wash your hands with soap and water regularly, for at least 20 seconds, especially before eating or drinking and after using the restroom and blowing your nose, coughing or sneezing If soap and water are not readily available, use an alcohol-based sanitizer with at least 60% alcohol Cover your nose and mouth when coughing or sneezing with a tissue or a flexed elbow, then throw the tissue in the trash Avoid touching your eyes, mouth or nose when possible From https://www.aace.com/recent-news-and-updates/aace-position-statement-coronavirus-covid-19-and-people-adrenal
  6. NotSoCushie

    awareness

    On December 12th, I am speaking at a sold-out event. I am telling half a funny story and posting it on YouTube. If people want to hear the rest they have to visit my website which is all about Cushing's. Everyday, I see people with Cushing's that don't know they have it. I want to reach these people and the general public to make them aware of our disease. I need a title for this video and am looking for your suggestions. The story is similar to the Abbott and Costello routine of Who's on first and What's on second. So far, I thought of: Is it obesity or Cushing's Disease? What would you suggest as an attention getter? When I post this video, I need your support to view it and go to my website to hear the rest of the story. If you could share the video and ask family and friends to do the same I would appreciate that. Wouldn't it be great if this went viral. So many people would learn about Cushings. WE can make this happen if we involve enough people. Lets go for it. Thanks again. Looking forward to those new titles..
  7. NotSoCushie

    awareness

    On Dec 12th, I am speaking at a sold-out event and telling half of a funny story, then posting it on YouTube, To hear the rest of the story people have to go to my website which is all about Cushing's disease. Every day I see people who I am certain have Cushing's but don't know it. I want to reach these people and the general public. What title can I use for my video? I need your help with this. The story is much like Abbott and Costello's Who's on second, what's on third routine. But there has to be a connection to cushing's. So far, I have: Is it obesity or Cushing's disease? When I get the title and post the video, I need the support of everyone here to view it and go to my website. If you could share and get family and friends to do the same that would be greatly appreciated. Wouldn't it be great if the video went viral and so many people would learn about Cushing's? We can make this happen if I get your support. Thanks everyone. Keep working on a better tite for me. Can't wait to see your suggestions. Thanks again. jan
  8. I am looking for some place like The Mayo clinic or Endocrinologists that would be interested in setting up a dietary study with their Cushing's patients, I am having great success with my specialized diet in lessening the symptoms of cushing's and want to help others get a better quality of life while living with this disease. The first picture is me with Cushing's in 2013 before surgery. the next two pictures are me now with a cushing's recurrence while on my specialized diet. For 3 years I used my body as a science experiment with foods. I don't have a moon face, I have not gained any weight, my girth is much less and my energy and strength are much better than the first time I had Cushing's. The only difference is my diet. For 2 years my endo refused to test me for cushing's again because I did not look the way I should. I had to get other doctors to do the first and secong level tests then I brought those results to my endo and asked him to do the dex suppression test. All tests confirmed Cushing's recurrence. He still won't believe me that my diet has anything to do with the way I look or feel. I am the proof, but he still wont beieve me. What will it take for people to listen to us and believe us????
  9. Presented by Nathan T Zwagerman MD Director of Pituitary and Skull base surgery Department of Neurosurgery Medical College of Wisconsin After registering you will receive a confirmation email with details about joining the webinar. Date: Wednesday, August 21, 2019 Time: 10:00 AM - 11:00 AM Pacific Daylight Time 1:00 PM - 2:00 PM Eastern Daylight Time Webinar Description: Learning Objectives: Describe the signs and symptoms of Cushing's Disease Describe the work up for patients with Cushing's Disease Understand the goals, risks, and expected outcomes for treatment Describe alternative treatments when surgery is not curative. Presenter Bio: Dr. Zwagerman is a Professor of Neurosurgery at the Medical College of Wisconsin. He did his undergraduate work in psychology at Calvin College in Grand Rapids, Michigan. He earned his medical degree at Wayne State University in Detroit. He did his fellowship in endoscopic and open cranial base surgery, and then his residency in neurological surgery at the University of Pittsburgh Medical Center.
  10. Presented by Nathan T Zwagerman MD Director of Pituitary and Skull base surgery Department of Neurosurgery Medical College of Wisconsin After registering you will receive a confirmation email with details about joining the webinar. Date: Wednesday, August 21, 2019 Time: 10:00 AM - 11:00 AM Pacific Daylight Time 1:00 PM - 2:00 PM Eastern Daylight Time Webinar Description: Learning Objectives: Describe the signs and symptoms of Cushing's Disease Describe the work up for patients with Cushing's Disease Understand the goals, risks, and expected outcomes for treatment Describe alternative treatments when surgery is not curative. Presenter Bio: Dr. Zwagerman is a Professor of Neurosurgery at the Medical College of Wisconsin. He did his undergraduate work in psychology at Calvin College in Grand Rapids, Michigan. He earned his medical degree at Wayne State University in Detroit. He did his fellowship in endoscopic and open cranial base surgery, and then his residency in neurological surgery at the University of Pittsburgh Medical Center.
  11. Guest

    Please help!!

    Can someone please help me? Over the past few years I have gained over 40 lbs, suffer from extreme fatigue, muscle cramps, headaches, just to name a few. I also have a hump between my shoulders. I have gone to see my primary care physician and asked about Cushing’s syndrome and she said that there’s just no way I could have this because it is so rare. I asked for a referral to see a endocrinologist and she finally agreed. After doing some research on this debilitating disease, I am convinced that I am it’s next victim. I am so scared. What can I expect from this endo appointment?
  12. Childs Nerv Syst. 2018 Nov 28. doi: 10.1007/s00381-018-4013-5. [Epub ahead of print] Gazioglu N1, Canaz H2, Camlar M3, Tanrıöver N4, Kocer N5, Islak C5, Evliyaoglu O6, Ercan O6. Author information Abstract AIM: Pituitary adenomas are rare in childhood in contrast with adults. Adrenocorticotropic hormone (ACTH)-secreting adenomas account for Cushing's disease (CD) which is the most common form of ACTH-dependent Cushing's syndrome (CS). Treatment strategies are generally based on data of adult CD patients, although some difficulties and differences exist in pediatric patients. The aim of this study is to share our experience of 10 children and adolescents with CD. PATIENTS AND METHOD: Medical records, images, and operative notes of 10 consecutive children and adolescents who underwent transsphenoidal surgery for CD between 1999 and 2014 in Cerrahpasa Faculty of Medicine were retrospectively reviewed. Mean age at operation was 14.8 ± 4.2 years (range 5-18). The mean length of symptoms was 24.2 months. The mean follow-up period was 11 years (range 4 to 19 years). RESULTS: Mean preoperative cortisol level was 23.435 μg/dl (range 8.81-59.8 μg/dl). Mean preoperative ACTH level was 57.358 μg/dl (range 28.9-139.9 μg/dl). MR images localized microadenoma in three patients (30%), macroadenoma in four patients (40%) in our series. Transsphenoidal microsurgery and endoscopic transsphenoidal surgery were performed in 8 and 2 patients respectively. Remission was provided in 8 patients (80%). Five patients (50%) met remission criteria after initial operations. Three patients (30%) underwent additional operations to meet remission criteria. CONCLUSION: Transsphenoidal surgery remains the mainstay therapy for CD in pediatric patients as well as adults. It is an effective treatment option with low rate of complications. Both endoscopic and microscopic approaches provide safe access to sella and satisfactory surgical results. KEYWORDS: Cushing’s disease; Endoscopic pituitary surgery; Pediatric; Transsphenoidal microsurgery PMID: 30488233 DOI: 10.1007/s00381-018-4013-5 Full Text
  13. Strongbridge Biopharma released additional positive results from a Phase 3 trial evaluating whether the company’s investigational therapy Recorlev (levoketoconazole) is safe and effective for people with endogenous Cushing’s syndrome. The latest results were presented in the scientific poster “Safety and Efficacy of Levoketoconazole in Cushing Syndrome: Initial Results From the Phase 3 SONICS Study,\” at the 18th Annual Congress of the European NeuroEndocrine Association (ENEA), which took place in Wrocław, Poland, last month. The SONICS study (NCT01838551) was a multi-center, open-label Phase 3 trial evaluating Recorlev’s safety and effectiveness in 94 patients with endogenous Cushing’s syndrome. The trial consisted of three parts: a dose-escalation phase to determine the appropriate Recorlev dose that achieved normalization of cortisol levels; a maintenance phase in which patients received the established dose for six months; and a final extended phase, in which patients were treated with Recorlev for an additional six months, with the possibility of dose adjustments. Its primary goal was a reduction in the levels of cortisol in the patients’ urine after six months of maintenance treatment, without any dose increase during that period. Among secondary goals was a reduction in the characteristically high risk of cardiovascular disease in these people, through the assessment of multiple cardiovascular risk markers. Strongbridge announced top-line results of the SONICS study in August, which showed that the trial had reached its primary and secondary goals. It concluded last month. After six months of maintenance therapy, Recorlev successfully lowered to normal the levels of cortisol in 30% of patients without a dose increase. It also led to statistically and clinically significant reductions in cardiovascular risk biomarkers, including blood sugar, cholesterol levels, body weight, and body mass index. Maria Fleseriu, MD, director of the Oregon Health Sciences University Northwest Pituitary Center, presented additional and detailed results of SONICS at the congress. Additional analyses showed that among the 77 patients who completed the dose-escalation phase and entered the study’s maintenance phase, 81% had their cortisol levels normalized. At the end of the six months of maintenance treatment, 29 (53%) of the 55 patients who had their cortisol levels assessed at the beginning of the study and at the end of the maintenance phase had achieved normalization of cortisol levels, regardless of dose increase. Among all patients who completed maintenance treatment (including patients with some missing data) and regardless of dose increase, 38% had achieved normalization of cortisol levels and 48% recorded a 50% or more decrease or normalization. The results also highlighted that Recorlev substantially reduced patients’ cortisol levels regardless of their levels at the study’s beginning (which were on average about five-fold higher than the upper limit of normal). In those patients with the highest levels of cortisol in their urine, Recorlev led to a median reduction of more than 80%. As previously reported, Recorlev was found to be generally well-tolerated, with no new safety concerns, and only 12 participants (12.8%) stopped treatment due to adverse events. Ten patients had three- or five-fold increased levels of alanine aminotransferase — a liver enzyme used to assess liver damage — which were fully resolved without further complications. These liver-related adverse events “were all noted in the first 60 days, thus suggesting a timeline interval for monitoring,” Fleseriu said in a press release. “We continue to be encouraged by the positive efficacy results of SONICS and the overall benefit-to-risk profile of Recorlev and look forward to sharing additional planned analyses from the study in the near future,” said Fredric Cohen, Strongbridge’s chief medical officer. From https://cushingsdiseasenews.com/2018/11/01/new-data-from-phase-3-trial-supports-recorlev-ability-to-safely-treat-cushings-syndrome/
  14. Cushing’s syndrome patients with tumors on both adrenal glands — which sit on top of the kidneys — could undergo adrenal venous sampling, a procedure where blood samples are taken from both adrenal glands to determine which tumors to remove, researchers suggest. Their study, “Outcomes of Adrenal Venous Sampling in Patients with Bilateral Adrenal Masses and ACTH-Independent Cushing’s Syndrome,” was published in the World Journal of Surgery. The work was a collaboration between SUNY Upstate Medical University in Syracuse and the University of Pittsburgh. Cushing’s syndrome, a condition characterized by excess cortisol, can be divided into two main subtypes. In some patients, the disease is dependent on tumors secreting the adrenocorticotropic hormone (ACTH), which stimulates the release of cortisol from the adrenal glands. In others, adrenal tumors are solely responsible for excess cortisol and do not require ACTH for functioning. ACTH-independent Cushing’s syndrome (AICS), the latter subtype, constitutes about 10% to 15% of endogenous — an overproduction of cortisol within the body — Cushing’s syndrome cases, with cortisol-secreting adenomas in just one gland (unilateral) being the most common cause. Compared to unilateral adenomas, adrenal tumors in both glands (bilateral) in patients with AICS are difficult to diagnose. Disease management in these rare cases depends on the challenging determination of the lesion’s exact location and of the functional status of the benign tumors (if they are actively secreting cortisol). Surgical removal of both adrenal glands, also known as bilateral adrenalectomy, “ensures cure of AICS, but leads to permanent corticosteroid dependence and a lifelong risk of adrenal crisis,” investigators explained. Therefore, screening for the presence of unilateral or bilateral adenomas is essential to avoid unnecessary surgery. “Adrenal venous sampling (AVS) has been reported in a single institutional series … to aid in successful localization of cortisol-secreting adrenal adenomas in patients with bilateral adrenal masses and AICS,” researchers wrote. Researchers retrospectively assessed the usefulness of AVS in guiding management of patients with bilateral adrenal masses plus AICS. Nine women (age 51-73) with bilateral adrenal masses and AICS were included in the study. All subjects had undergone AVS at the University of Pittsburgh Medical Center from 2008 to 2016. None of the patients had apparent symptoms of Cushing’s syndrome. “Samples were obtained for testing of epinephrine [also called adrenaline] and cortisol from both [adrenal veins] and the external iliac vein. Multiple samples were obtained to ensure adequate sampling,” they wrote. Adrenal glands produce cortisol and epinephrine, among other hormones, which are critical for maintaining good health. In AICS, there’s an overproduction of both hormones that’s independent on the release of ACTH, which is produced by the brain’s pituitary gland. Successful adrenal venous sampling was achieved in eight women. “One patient with unsuccessful catheterization had [other additional diseases] and passed away from unrelated reasons,” researchers reported. AVS results indicated that all patients had bilateral cortisol-secreting adenomas. “Surgical management was strongly influenced by adrenal mass size. However, AVS may have influenced surgical decision-making in some cases, particularly when minimal difference in size was noted in adrenal mass sizes,” they reported. Six women underwent adrenalectomy: three had the gland with larger size mass removed (unilateral type of surgery); two had both glands removed; and one had the right gland removed followed by the left one, five months later, due to continuous hormonal overproduction without experiencing symptoms of Cushing’s syndrome. Evidence suggests that removal of the larger adrenal mass in patients with bilateral cortisol-secreting adenomas improves Cushing’s syndrome presentation. In theory, unilateral adrenalectomy reduces cortisol production through the removal of the oversecreting mass. Because of this, unilateral adrenalectomy of the larger adrenal mass was chosen in half of this study’s surgical cases, instead of bilateral adrenalectomy. Tissue analysis revealed multiple-lump masses, also known as macronodular adrenal hyperplasia (MAH), in all six surgical cases. In addition, computed tomography (CT) scan findings were predictive of bilateral MAH, with scans showing evidence of one or multiple nodules on one or both adrenal glands. “To the best of our knowledge, this is the second study to evaluate the utility of AVS in guiding management of patients with bilateral adrenal masses and AICS,” investigators said. The first study was by Young and included 10 patients with a more severe presentation of Cushing’s syndrome and other individual characteristics, which contributed to the differences in results, compared to the current study. In Young’s study, half the subjects had unilateral adrenal masses. Patients with bilateral cortisol-secreting masses frequently have a milder form of Cushing’s syndrome, which corroborates researchers’ findings. Despite suggesting that adrenal venous sampling is useful in excluding a unilateral adenoma as the cause of AICS, this study’s sample size is small. “More data are needed before AVS can be advocated as essential for management of patients with bilateral adrenal masses and AICS,” researchers concluded. From https://cushingsdiseasenews.com/2018/10/02/adrenal-venous-sampling-helps-surgical-decisions-type-cushings-syndrome/?utm_source=Cushing%27s+Disease+News&utm_campaign=a990429aad-RSS_WEEKLY_EMAIL_CAMPAIGN&utm_medium=email&utm_term=0_ad0d802c5b-a990429aad-72451321
  15. Guest

    Feeling frustrated

    Im wondering if anyone else has had to deal with differing lab values. Ive been dealing with cushings type symptoms for about 1.5-2 years now. My main ones are weight gain (60 lbs in 6 months with no diet/exercise changes), unexplained fast heart rate, crazy purple painful stretch marks on my abdomen and now my arms, change in where I carry weight (from my legs/hips to abdomen/face/neck), increased hair on face, increase in acne (feel like I'm 15 again), mood changes, severe headaches, insomnia, muscle weakness, irregular menses, muscle cramps, facial twitching, etc. The weight gain has been so bad a family member who didn't see me for about 4 months commented that they didn't even recognize me. The trouble is I have had testing that has come back high, borderline, normal, and even low. Im at a total loss and trying to get a doctor to believe me has been a real trick. Has anyone faced this before? Did you find a doctor that helped? Im at a total loss of what to do at this point.
  16. Guest

    Developing Cushings?

    Hello! I have been on hydrocortisone for almost two years from LOW-functioning adrenal glands. At first, the medication helped me (my blood pressure was so low, I was dizzy, sickly, couldn't bathe, needed help to the restroom, couldn't eat, heart racing, trouble breathing, and more). It helped me get out of bed again....temporarily. It helped a little with the shortness of breath. It helped me with my racing heart and blood pressure. I was on it about 8 months and then I started developing my symptoms all over again. I'm pretty much bedridden. I know I need to get off the steroids because docs have been saying that pretty much ever since I was put on it. They were so worried about me being on it and now I can understand why. I feel WORSE. Do you know if Cushings can come from taking steroid medication long term? I am developing a buffalo hump and I am feeling so ill every day. I want to wean from the meds, as I feel they are making me worse, but any weaning has resulted in worsened symptoms (that have already worsened). I am 26 year old female. I was a half-marathon runner/athlete at age 22, then a year later after my cousin's death, my health rapidly declined. Stress got to me and I became sicker and sicker, leading to weakened adrenals and the need for hydrocortisone. I just want to FEEL 26. I don't think I HAVE cushing's because my blood pressure is still low or low normal when checking. I have definitely gained weight (70 pounds since the steroids) and have a round face. Any thoughts? Thank you very much.
  17. Sadly, we lost another Cushing’s patient on Friday, May 9, 2014. Melinda was a member of the Cushing’s Help message boards since Jun 24, 2007. She was only 25 and left behind a young son and many loving family members. Read more at https://cushingsbios.com/2015/05/09/in-memory-of-melinda-smith-1988-2014/
  18. He died of a presumed heart attack. September 19, 2015 he said 'I was diagnosed hypertensive way back when I was 20. The condition remained for years, and became more acute with my cushings pit tumor. I still have high blood pressure, partially teated with three meds. I'll have to consult my doc and see if this may also be an issue.' More information at https://cushingsbios.com/2016/05/08/in-memory-gregory-j-bart-jr-may-7-2016/
  19. In Memory: Kathryn McBride ‘Bridie’ Miller Murdered May 1, 2007 'My name is Caroline and I dont post often but have met a few of you guys and read the board regularly, it has definitely been a godsend to cushies everywhere. The reason I am writing tonight is I have just received devastating information about a dear friend of mine, and a woman some of you may have met during testing. Her name is Kathryn Miller and she is a patient of Dr. Ludlam, that is how she and I met. She was diagnosed with cushings late last fall and had surgery in December and was doing pretty well afterwards...' Read more at https://cushingsbios.com/2015/05/01/in-memory-kathryn-mcbride-bridie-miller/
  20. I plan to do the Cushing's Awareness Challenge again. Last year's info is here: https://cushieblogger.com/2017/03/08/time-to-sign-up-for-the-cushings-awareness-challenge-2017/ 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…?
  21. Sign Up and Enjoy Patient Benefits To join our database and to receive a $5 gift card if you qualify, please complete the form below. Currently, we are looking for patients and caregivers with many different rare conditions. Please fill out the sign-up form below and we’ll let you know if you qualify. If you are the caregiver of more than one patient, or are both a patient and caregiver, please fill out a separate entry for each and you will receive multiple gift cards. Please be aware that each entry is checked individually. Please include your correct personal phone number as we will call you to verify your information. It may take up to four weeks before you receive your gift card if you qualify. Read more about how we use your information. At this time we are accepting patients and caregivers across all diseases and conditions. However, that does not guarantee we will have surveys for you. If there are not any companies that have treatments available, or there are no companies developing treatments, then there would be no sponsors for surveys. But we are always looking for sponsors for all disease categories! Only one caregiver per household, please! That is because our survey sponsors won’t allow more than one response from caregivers in the same household. If you have more than one caregiver, you can decide which of you can do each survey. Please be aware that the rewards you earn from participating in market research, like all income you receive, is considered taxable by the IRS. We are required to submit form 1099 for each patient or caregiver whom we pay $600 or more in a year. We are proud to say that we’ve rewarded patients with over $2.1 million for participating in surveys in the past four years! Register here!
  22. NotSoCushie

    alcohol

    Hi Cushies: Without alcohol, I felt like I was walking around in a brain fog dream state. Did anyone with Cushings disease notice that when they drank alcohol they could drink a much larger amount than ever before without getting a buzz or being drunk?
  23. A friend of mine, who is a nurse, randomly asked if I had ever been diagnosed with Cushing's Syndrome. I told him no, I'd never heard of it before, and started looking into it. I probably shouldn't have, because now I am paranoid. Some of my symptoms match, but I don't have the main symptoms. I'm fairly thin, with pale skin which bruises and tears easily. I have been diagnosed with depression and anxiety which lead to panic attacks, and the medications I take don't seem to work for me. I have a naturally round face, or so I think, that is almost always red with acne on my cheeks and neck. I don't think I'm gaining weight, or have a hump between my shoulders. I'm afraid to think I have something so severe just because I want to feel better from this crippling depression that has taken 4 years of my life from me. Do I sound like a Cushie?
  24. People with high cortisol levels have lower muscle mass and higher visceral fat deposits, putting them at a greater risk for cardiovascular disease, new research shows. High levels of cortisol can result from a variety of reasons, including Cushing’s disease and adrenal tumors. Most adrenal tumors are found to be non-functioning, meaning they do not produce excess hormones. However, up to 47 percent of patients have mild autonomous cortisol excess (MACE). The study, “Impact of hypercortisolism on skeletal muscle mass and adipose tissue mass in patients with adrenal adenomas,” was published in the journal Clinical Endocrinology. Long-term studies have shown that as a group, patients with MACE tend to have increased cardiovascular risk factors, such as hypertension, type 2 diabetes mellitus (DM2), obesity, and high lipid levels, which are associated with higher cardiovascular death rates. Abdominal adiposity, which refers to fat deposits around the abdomen and stomach, and central sarcopenia, referring to loss of skeletal muscle mass, are both known to be linked to higher cardiovascular risk and increased mortality. Overt hypercortisolism is known to lead to increased visceral adiposity (body fat stored within the abdominal cavity) and muscle loss. However, little is known about the body composition of patients with adrenal adenomas and MACE. Therefore, researchers set out to determine whether central sarcopenia and adiposity are present in patients with MACE, and whether they can be markers of disease severity in patients with adrenal adenomas. To determine this, researchers used body composition measurements of 25 patients with Cushing’s disease, 48 patients with MACE, and 32 patients with non-functioning adrenal tumors (NFAT) using abdominal CTs. Specifically, researchers looked at visceral fat, subcutaneous fat, and total abdominal muscle mass. Visceral fat refers to fat around organs, and it is “deeper” than subcutaneous fat, which is closer to the skin. Results showed that, compared to patients with non-functional tumors, those with Cushing’s disease had a higher visceral to total (V/T) fat ratio but a lower visceral to subcutaneous (V/S) fat ratio. In MACE patients, however, both ratios were decreased compared to patients with non-functional tumors. Cushing’s disease patients also had 10 cm2 less total muscle mass, compared to patients with non-functional tumors. An overnight dexamethasone suppression test was conducted in these patients to determine levels of cortisol in the blood. The next morning, cortisol levels were checked. High levels of cortisol indicate the presence of a disease, such as MACE or Cushing’s disease. After administering the test, researchers determined that for an increase in cortisol in the morning, there was a correlating increase in the V/T ratio and the V/S fat ratio, and a decrease in the mean total muscle mass. Therefore, the higher the degree of hypercortisolism, the lower the muscle mass and the higher the visceral adiposity. These results could prove to be clinically useful as both visceral adiposity and low muscle mass are risk factors of a number of diseases, including cardiovascular disease. “Body composition measurement may provide an additive value in making a diagnosis of clinically important MACE and aid in individualizing management of patients with ACAs and MACE,” the researchers concluded. From https://cushieblog.com/2017/12/01/high-cortisol-levels-as-seen-in-cushings-can-lead-to-greater-risk-of-heart-disease-study-finds/
  25. I am a very late entry. Shortly after my 5th anniversary post surgery 2005, in the 6th year, I knew something was "different". That old sense of dread returned. At the 6th anniversary checkup, I popped a "high" on urine cortisol. But it was a one time thing, not repeated in a "sequential lab". Over the next two years, my blood sugar went haywire, not controlled by higher and higher doses of metformin. My weight began creeping up from 150# to just over 180# when the blood labs confirmed in the 8th year, "the monster" was back, with a new head. I was referred to UVA, Dr. Mary V. and her teammate surgeon, Dr. O. They also brought in the GKS EXPERT at UVA, a pleasant "young man", In 2013, October I had debulking of the tumor and 7 weeks later in December the GKS. We put on some fine music and I took a nap. Here I am in the 4th year since second round of surgery, and all labs are excellent. Getting OLD isn't so much fun, but endocrine is OK.
×
×
  • Create New...