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A message and request from community leaders at National Adrenal Diseases Foundation (NADF.us) to individuals with adrenal insufficiency who require a daily replacement of fludrocortisone (mineralocorticoid):
"We have received reports regarding challenges some patients have experienced when obtaining fludrocortisone manufactured by Teva Pharmaceuticals. On January 6, 2025, Teva Customer Service informed us that the medication is on their "obsolete list," which may indicate potential discontinuation. While an official notice has not been issued, discontinuation could occur at any time.
The purpose of this anonymous survey is to better understand patient experiences and any challenges related to transitioning to a different brand of fludrocortisone."
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If this pertains to you and you are interested in sharing some information with NADF, please visit this survey: bit.ly/Fludro
Disclosure Statement: This survey is intended for individuals with adrenal insufficiency who require a daily replacement dose of the mineral
Every Saturday for a long while now, has been my death day. Just what I call it. It’s the first day of the week I don’t have to force myself to be active or push myself to my limit at work. So I usually spend the day in bed unable to stay awake for longer than an hour at a time. But I started a different med for my POTS and orthostatic hypotension and I feel…. Mostly alive today. I don’t know what to do with myself. I’m still spending a lot of time in bed because I’m scared I’ll overdo it and then be dead tomorrow instead. But yeah…. Here’s to hoping this med will continue to help me.
It is so frustrating having appointments not come in. I saw neuro 2 years ago, he said he'd see me again after 3 months. I saw cardio in February, he said he'd see me again in 3 months (and my GP won't start my POTS medication because my endocrine team haven't even responded to whether I can take the medication they want me on (fludrocortisone) - like, surely they can at least try and communicate with each other. One email. So now I'm going to have to ring endocrine nurses (I do feel like I need another synacthen test anyway) and find out whether I can take fludro, and then either try and get my GP to start based on that OR chase up cardio. Why is having ill health a full time job?
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@other potsies
Have any of you been on fludrocortisone? (Also called uhh Florinef apparently??) my cardiologist put me on it and the stuff on google is spooky
Hey, I just found your Tumblr through imthegirlthat. I also struggle with POTS. I am curious, are you on any medication for this? I was just recently diagnosed by my family practitioner who does not know much about the illiness. She said we can educate each other but we both have to do our research. Thank you so much!
I am currently on propranalol for tremors and prozac for depression, both which seem to help POTS slightly. I have tried fludrocortisone and midodrine with no real success. Honestly, IV saline helps me the most. I also started an exercise plan with a physical therapist that we are hoping will help. I would recommend the book "The Dysautonomia Project" for any new potsies and their doctors. Hopefully you find a good treatment for you. My first doctors told me to google POTS, so thats how I found out a majority of what I know about it.
Okay but "rapid hair growth" is the most ridiculously mild sounding side effect of steroid meds and I just ???? "This will make you nauseous and lower your immunity and make your muscles hurt and oh yeah also your body hair will grow fast"
