If you can help, please respond here or on the Message Boards. Thanks!
I have many symptoms of cushings, I have used cloatasol propionate for about 5 years for my chronic eczema I was on oral steroids in July then high dose steroids again in September. thejuly in July it was for a severe eczema breakout and in September it was for sudden hearing loss. Now I need a hearing aid. I seen one place after googling that connects cushings with sudden hearing loss. Has anyone dealt with this?
I am thankful, believe it or not, that I had Cushing’s. Mind you, I wouldn’t want to have it now, although diagnoses and surgeries seem “easier” now.
Having Cushing’s taught me a lot, including how to stick up for myself, how to read medical books to learn more about my disease, how to do web design, how to navigate NIH. It taught me patience, how to make phone calls. It brought me a lot of new friends.
I am also thankful that people are becoming more empowered and participating in their own diagnoses, testing and treatment. Things have changed a lot since my surgery in 1987!
When I had my Cushing’s over 30 years ago, I never thought that I would meet another Cushing’s patient in real life or online. Back then, I’d never even been aware that there was anything like an “online”. I’m so glad that people struggling with Cushing’s today don’t have to suffer anymore thinking that they’re the only one who deals with this.
Because of my work on the websites – and, believe me it is a ton of work! – I have had the honor of meeting hundreds of other Cushies personally at local meetings, conferences, at NIH (the National Institutes of Health in Bethesda, MD where I had my final diagnosis and surgery). It occurred to me once that this is probably more Cushies than most endocrinologists will ever see in their entire career. I’ve also talked to countless others on the phone. Amazing for a “rare” disease!
I don’t know what pushed me in 1983 when I first noticed I was sick, how I got the confidence and self-empowerment to challenge these doctors and their non-diagnoses over the years. I’m thankful that I didn’t suffer any longer than I did and I’m glad that I have a role in helping others to find the medical help that they need.
Today, I’m grateful that there have been no more Growth Hormone problems like the one below.
Wednesday, October 25, 2017, 11:08 PM on Facebook
Me: My $450 monthly co-pay refrigerated medication was overnighted to me yesterday, arrived a couple miles from my house at 7:05 this morning. UPS couldn’t get it to me today so they’ll “deliver it tomorrow between 12:30-4:00” .If that ice is melted, the medication is ruined. I see angry phone calls tomorrow.
Friend 1: My Specialty pharmacy replaces it free of charge if that happens. Or at least that’s what they tell me will happen. I asked because our UPS driver is terrible.
Me: We’re on the phone with the pharmacy right now.
Friend 2: OMG, you have one of those copays too?
😡 (Part D? So you have the same donut hole joy we do in Jan/Feb?)
I hope the pharmacy replaces/handles it. “At least” it’s tracked, so clearly documented as being en route for too many hours.
Me: Yup. People not on Medicare can get this close to free.
🙁
Still on the phone.
🙁 I hate this, ummm, stuff.
Friend 2: Ditto. The drug companies can give it for $25/copay with private insurance, and some f’d up anti-kickback statute prevents them from doing the same for anyone on federal insurance, including Medicare, even when it’s under patent or otherwise has no generic (which is the point of the damn statute). 😡
The drug companies HAD (in our case, until this year) worked around it by funding independent patient copay programs to avoid the bad PR/increased regulation risks from being like Gleevec a decade ago (let’s bankrupt the cancer patients for whom this works and keeps them in remission indefinitely!), but at least with the myeloma oral chemos they’ve pulled their funding and the copay assistance programs have shut down, AND they’re raising the prices 20% (in the US, not countries that can legally, oh, bargain with pharm companies) to cover other drug failures. (I’m sure they’re hardly turning any profit at all, though, and the combined actions are totally 100% necessary. And I’m someone who *wants them* to turn a good profit so they’re incentivized, but come on. It’s absurd that the $$$ drugs that are a quick sub-q injections in an office building is fully covered by Part B and supplemental, whereas the “patient convenient” pills cost one $13k or so annually in copays.
Friend 2: But aside from my thread jacking rant (😳), I really hope you’re a) not entirely out right now, and b) it’s resolved at no additional cost to you or having to stay home again all day to sign for delivery.
😞
Me: We’re still on the phone
🙁 This is the 4th person.
This person on the phone can’t guarantee that it will be still cold but is hesitant to send another shipment at no cost
Friend 2:
🙄 Will they send at no cost if it arrives ruined? Like, you can have a time stamped photo and video of melted ice, and the tracking info with a delivery time stamp?
😕
It should really come out of their insurance or likely-contract with UPS.
Me: Don’t know yet but they’ve added a 5th person on the line. This can’t be the first time UPS messed up a temperature-sensitive medicine.
Now they’re going to call back in the morning. (HAHA)
🤣
Friend 2: I *constantly* want an eyeroll reaction button on FB. Good luck, and as long as you don’t run out before it comes I do have faith that you’ll end up not-screwed! (It’s just going to cost you time and frustration vs a second $450.)
Me: Still on the phone. This is nuts. I have 1 more cartridge (about 15 days worth)
Friend 2:
👍🏽 to enough on-hand,
🙄
🙄
🙄 to the phone mess?
Me: Phone call is over, nothing resolved. 5 reps, a couple robots and background music. To be continued in the morning…
Friend 3: I had that happen but it would have made it 3 days. I told them the cost and how long it could be in shipping. If they were to do as planned, it would be on them. They got a courier and I got it that night.
Friend 4: I would report it to whom ever you get the medication from . When I was getting a refrigerated medication they would never send them to arrive on a Sat.or around the holidays. They always made sure I got it next day Shipment !
Me: Mine is marked “next day” and they ship it by UPS Next Day Air Saver®
Me: I guess they saved the money but the Next Day got lost somewhere.
Friend 5: UPS explained to me that when the package is labeled “Air Saver” UPS can deliver the package anytime that day. If the package is labeled just Next Day Air, they have to deliver it in the morning. The problem is that the RXplan won’t pay the additional amount required by omitting the air saver.
Friend 6: Praying you get this mess resolved!!!
Me: Thanks!
Friend 7: This is what shipping insurance is for; it’s between the pharmacy and the shipper. ETA: only stable up to 24 hrs at room temp.
Me: Mine is only supposed to be between 2° to 8°C (36° to 46°F)
Friend 7: and starts losing potency quickly if not. Me: I know
🙁
Friend 5: Mary, I had the same problem on a day Texas temperature was 104 degrees. UPS delivered my GH the correct day but after 7 pm. The medication was warm when it arrived. My specialty pharmacy gave me a hard time about it. I phoned the manufacturer and talked to a nurse on the support team who said the med needed to be replaced and to have the pharmacy contact her if needed. I called the pharmacy and argued with the pharmacist for 15 minutes. I asked him if he wanted to be responsible for my taking a medication that wasn’t safe. He finally agreed to replace it. The box with my med was only half covered by the cold packs, and the tracker didn’t show damage, so the pharmacy argued about replacement. I responded with the fact that those trackers are not always accurate. They can and do fail. If he had continued to argue, I would have insisted he talk to the nurse with whom I spoke.I called my insurance plan and complained about the pharmacy. If you call the manufacturer of your med, be sure to get the name of your contact there. Good luck. I’m sorry you have that hassle.
Friend 8: So sorry!! Hope it gets to you in good, COLD condition. What an aggravation for you.
Friend 9: Refuse it… they replace it
Me: This doesn’t require a signature so they usually just drop it and run. Luckily, we have a dog who will sound the alarm.
Friend 9: Oh and Ask for fedex delivery all of the time
Me: 4:31 PM. The “window” today was 12-4:30. It’s still not here and back on the phone.
Me: I forget to mention that it’s going to take 8 days to track this package. Egads!
Me: I had to leave. Tom sent me a text “Donna from last night Called at 5pm I told her we were now considering replacing Humana.They are declaring the package lost and sending a replacement shipment immediately.It will arrive by 10:30 am Friday”. We’ll see! Several hours of phone calls and 15 people on their side. Aarrgghh
Friend 2: I will say that FedEx has been really consistent with ours (which ironically would basically be fine if lost for a few days, aside from extreme temperature ranges), though the whole designated “morning” and “afternoon” windows are a joke. (“Afternoon” has come before 8 am, “morning” at 3:30pm…but always the correct day! Just irritating since it’s so regulated – next-gen thalidomide, all those birth defects – it *has* to be signed for.) In case they’ll let you request FedEx after this.
🙄
Me: Today’s meds are coming UPS again but it shows as “Out for Delivery” today. Then, again, it said that on Wednesday, too. The difference is today has to be signed for and it’s supposed to be here by 10:30 so I can take my mom to a birthday lunch.
1 hour, 15 minutes and counting…
Me: Success!
Kevin C.J. Yuen, MD
Director, Barrow Pituitary Center
Director, Barrow Neuroendocrinology Clinic
Barrow Neurological Institute
Phoenix, Arizona
After registering you will receive a confirmation email containing information about joining the Webinar.
To discuss the anatomy of the pituitary gland
To discuss the physiology of pituitary hormone secretion
To discuss what can go wrong and how to treat pituitary disorders
Kevin C.J. Yuen, MD, is a neuroendocrinologist and Medical Director of the Pituitary Program at Barrow Neurological Institute, specializing in the management of hypothalamic-pituitary disorders. He is double board-certified in Endocrinology and Internal Medicine by the American Board of Internal Medicine, and General Medical Council in the UK.
Dr. Yuen’s expertise includes clinical and research interest in the management of pituitary and adrenal disorders, particularly adults with growth hormone deficiency, acromegaly, hypogonadism, Cushing’s disease and adrenal insufficiency. He also has a particular interest in neuroendocrine disorders in young adult cancer survivors and adults with traumatic brain injury. His research is devoted to new diagnostics and treatments of pituitary disorders.
Dr. Yuen received his medical degree from University of Sheffield, UK. He completed his residency in Internal Medicine at University of Southampton, UK, clinical and research fellowship in Endocrinology at University of Cambridge, UK, and clinical and research instructor at Oregon Health and Science University, Portland, OR. Dr. Yuen is active in national and international collaborative studies, and has published extensively in numerous peer-reviewed medical journals, authored several book chapters, and is a frequent guest speaker on various topics related to pituitary disorders.
Do you think allergies are worse post-op?
I posted on Facebook that I’ve learned the hard way that I had an allergic reaction to blackberries. I’ve known about my strawberry allergy for decades and have avoided them mostly successfully. Apparently, they’re both in the same class of allergens 🙁
These blackberries were in an ice cream. And it was a good ice cream. Drat!
I have a lot more steroids to take for a few days. Oh, joy! And, another wean at the end.
Someone responded: “The further we get from Cushings, the more allergies surface. So glad you got help. Scary stuff!
So, in my informal poll – what do you think? Are your allergies worse or are you having new ones after Cushing’s?
Today, I’m thankful for my “Cushie Car”.
Since I started attending Cushing’s events, I’ve always tried to rent a PT Cruiser. There’s just been something about them that I liked.
A couple of years ago, after my son was out of school, I was getting tired of driving the Mom-Carpool-Van everywhere. I think my mom was getting tired of stepping up into it, too. She doesn’t drive anymore, so she relies on whatever vehicle I’m driving to get her to appointments. So, I was delighted when she offered to pay for part of it. She didn’t realize it was going to be bright blue, though. I think she was thinking of navy or something more dignified.
Anyway, I had the car picked out, and the exact color I wanted and set off to the car dealership with my specs. They told me that the Cruiser didn’t come in this shade of blue. I’m sure that they wanted to sell one of the colors they had on the lot.
I got back to them and told them that I found this car online and I could go get it myself. Suddenly the dealership was able to get it for me, too, so I won out. WooHoo.
I’m just loving this car. 🙂
From a Cushing’s get-together in Columbus, OH, 2007, the yellow version 🙂
Barrow Neurological Institute
Sonntag Pavilion
St. Joseph’s Hospital and Medical Center
350 West Thomas Road, Phoenix, AZ 85013
October 27, 2018
8:30 AM to 4:00 PM
The Barrow Pituitary Center is dedicated to educating patients, caregivers, and loved ones by providing information which is current and non-biased. Experts at this conference will address management of the emotional and physical elements of living with pituitary disorders. We hope attendees will leave empowered to make better-informed decisions about their healthcare and achieve their goals for a long and fruitful life.
Event Flyer or to register, visit the Barrow Website
For more information contact Maggie Bobrowitz, RN, MBA, at (602) 406-7585 or Margaret.Bobrowitz@DignityHealth.org.
Friday, October 19 at 8:00am to 4:00pm
Belfer Research Building, 3rd Floor
413 East 69th St., New York, NY 10021
This course is a comprehensive overview and discussion of the evaluation; management; and medical, surgical, and radiation treatments of the pituitary tumor. The conference will comprise lectures, case-based talks, and Q&A panel sessions.
The pituitary gland plays an enormously important role in human development, the maintenance of various essential physiologic functions, and aging and senescence. Hence, the health of the pituitary gland is critical at all stages of human life. For this reason, there are a variety of pituitary disorders that can have a profound impact on multiple organ systems at different ages. General practitioners and even specialists in endocrinology may not be fully aware of the widespread impact of the pituitary gland in health and disease; the function of this course is to educate and inform a general medical audience on pituitary disease.
For more information visit their website or contact Tatiana Soto at tas2041@med.cornell.edu or 212-746-0403.
Jess asks on the Message Boards:
Hello, – a little back story. I have a 15 year old son who over the past couple of years has gained 60 pounds and has increasingly become angry, depressed, anxious- to the point where he was having thoughts of suicide. We went to a behavioral health specialist who put him on anti-anxiety meds, but his aggression has become worse and worse. I literally found myself last week saying, never in my life would I think this kid would act so violently towards me or his siblings. He was a good, sensitive kid. His mood can change in the blink of an eye. He also is very withdrawn and anxious to the point where he now does online school. We have contributed all of this to puberty and life experiences, just typical teenage stuff… but last week, when i was able to actaully have him come out of his room… i noticed a “lump” on the top of back, base of the neck. I am not sure if a buffalo hump can be caused by playing video games and sitting in a computer chair for 18 hours a day? Or if this is considered a buffalo hump??
Respond to Jess here: http://cushings.invisionzone.com/topic/54467-cushings-in-15-yo-male
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