I'm in the midst of updating my massive medication list, as I am going to see my Cushing's specialist today. It occurred to me that after all these years of being sick, I still don't know how to read all the abbreviations on a prescription. Cushing's just won't allow me to commit some new things to memory, but thanks to Google, you and I can learn once these terms once and for all.
Monday, October 28, 2013
Thursday, October 10, 2013
SIGN THE PETITION: We deserve better than Solu Cortef
Cushies deserve a better emergency injectable device than the one option we have in Pfizer's Solu Cortef. This medication is used during an adrenal crisis, in an emergency (http://cushingsmoxie.blogspot.com/2011/12/my-friends-with-adrenal-insufficiency.html).
There are just too many steps for me to follow while semi-conscious before getting the high dose of steroid that will save my life.
There are just too many steps for my caregiver to follow when seeing me semi-conscious before giving me the high dose of steroid that will save my life.
Meet Rachel. She is doing something about it.
This mom is fighting to make it happen. Rachel, a British mother, desperately wants her child and family to have an easier way to administer emergency cortisol injections--like Solu-Cortef for her 14 year old daughter with hypopituitarism. Her daughter doesn't make any cortisol and relies on replacement steroids, like Addison's patients or Cushies after pituitary surgery or bilateral adrenalectomies.
Please read their story and consider signing the petition.
If you live in the United Kingdom, please sign this petition:
http://you.38degrees.org.uk/petitions/for-cortisones-sake-give-steriod-dependents-the-life-saving-injection-they-need
If you live elsewhere in the world, please sign this petition via facebook:
https://m.facebook.com/rachelpeglersavinglivesforsterioddependants/about?notif_t=page_new_likes&__user=100000742731717
Sunday, October 6, 2013
BLA "relatively safe and provides adequate success"
I have watched several close friends get bilateral adrenalectomies in the past few months and at least another hundred get BLAs since I learned I have Cushing's in 2007.
I am ready to have mine. With my body at its weakest but my will at its strongest, I want to get on with the rest of my life. I want to see what happens next for me.
What a timely article filled with information I need to know right at this exact moment in my life.
While it is hard to know it at the time, hindsight shows that things always work out for me.
--m
- Journal of Clinical Endocrinology & Metabolism
- Special Features
- Katrin Ritzel,
- Felix Beuschlein,
- Anne Mickisch,
- Andrea Osswald,
- Harald J. Schneider,
- Jochen Schopohl and
- Martin Reincke
- Address all correspondence and requests for reprints to: Martin Reincke, M.D., Medizinische Klinik und Poliklinik IV, Klinikum der Universität München, Ziemssenstrasse 1, D-80336 München, Germany. E-mail:Martin.Reincke@med.uni-muenchen.de.
Abstract
Background: The outcome of bilateral adrenalectomy (BADx) in patients with Cushing's syndrome (CS) is not well characterized.
Methods: A literature search was performed with the search terms "bilateral adrenalectomy" or "total adrenalectomy" and "Cushing's" or "Cushing." Immediate and long-term outcomes after BADx in CS were analyzed using descriptive statistics (median [range]).
Results: From 549 screened publications, 37 studies met inclusion criteria (1320 patients, 82% having Cushing's disease [CD], 13% having ectopic CS, and 5% having primary adrenal hyperplasia). Surgical morbidity and mortality of BADx (23 studies, 739 patients) were 18% (6–31) and 3% (0–15), respectively. In patients with CD, surgical mortality was below 1%. Although residual cortisol secretion due to accessory adrenal tissue or adrenal remnants was found in 3–34% (5 studies, 236 patients), less than 2% had a relapse of CS. Symptoms of hypercortisolism (eg, hypertension, obesity, or depression) improved in the majority of the patients after BADx (7 studies, 195 patients). The number of adrenal crises per 100 patient-years was 9.3 (6 studies, 203 patients). Nelson's syndrome occurred in 21% (0–47) of the patients (24 studies, 768 patients). Mortality (23 studies, 690 patients) was 17% (0–88) at a follow-up of 41 months (14–294). Remarkably, 46% of the patients died in the first year after surgery. The median ages at death were 62 years (CD) and 53 years (ectopic CS).
Conclusion: BADx is relatively safe and provides adequate success. Excess mortality within the first year after surgery suggests that intensive clinical care for patients after BADx is warranted.
Footnotes
For editorial see page 3974
Abbreviations:
- BADx
- bilateral adrenalectomy
- BAH
- bilateral adrenal hypercortisolism
- CD
- Cushing's disease
- CS
- Cushing's syndrome
- ECS
- ectopic CS
- NS
- Nelson's syndrome
- QOL
- quality of life
- TSS
- transsphenoidal surgery.
- Received February 21, 2013.
- Accepted August 5, 2013.
- Copyright © 2013 by The Endocrine Society
Friday, October 4, 2013
Brimscombe mum's plea for injection pen which could save her little girl’s life
Yes, we need the Solu-Cortef pen to be easier to dispense. My growth hormone Nutropin is so easy to do. The injectable that saves our life should be just as easy. I'm signing the petition. Will you?
Brimscombe mum's plea for injection pen which could save her little girl's life
6:02pm Monday 30th September 2013
By Hayley Mortimer
MUM Rachel Pegler has issued a heartfelt plea to SNJ readers to back a petition for health bosses to create an injection pen which could save her little girl's life.
Brimscombe schoolgirl Molly, 14, suffers from a rare condition called hypopituitarism, which can be fatal if levels of the hormone cortisol drop too low and she does not receive an injection in time.
She cannot leave the house without a life-saving kit that contains a syringe, needles and vials of hydrocortisone and her teachers at Thomas Keble School have been trained to give the jab.
Rachel is urging medical bosses to create an 'epi-pen' for this type of illness, which would enable Molly to administer her own injection in an emergency.
She has launched an online petition to get the issue raised in Parliament, which has already attracted more than 2,000 signatures.
"We currently have a very outdated style injection," said Rachel, an artist and illustrator.
"I worry that when alone and close to unconscious my little girl would not even be able to take the top off the glass tube.
"An injection pen could mean life or death."
Cortisol is a chemical hormone produced by the body to manage stress by providing a boost of blood sugar.
When Molly becomes stressed or unwell she is unable to produce enough cortisol and has to rely on extra steroids, which she takes three times a day.
If she is sick or suffers any trauma or injury she needs an emergency injection and hospital treatment.
Molly, who has an older brother Josh, 19, and younger sisters Poppy, 10, and Primrose, one, also has other health problems, which affect her immune system.
"Ultimately I would like my little girl to finally have a normal life," said Rachel.
"Molly is the most cheerful lovely girl. She loves writing scripts and fiction.
"It is such a strain on all of us when she is poorly, we all find it very hard.
"Molly has gone through so much and deserves the knowledge that no mistakes will be made in saving her life in an emergency situation."
To sign the petition go to http://tinyurl.com/o2dwoxp
© Copyright 2001-2013 Newsquest Media Group
Cortisol: The Hormone Maverick
Not too many things about Cushing's make me laugh. This lecture title did.
Hypercortisolemia: When a Good Hormone Goes Bad
Subscribe to:
Posts (Atom)