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Want to connect with other Cushing's disease Patients
I was diagnosed with Cushing's in 2020. I had a pituitary adenoma. Surgery was successful, however the post-op treatment was not. Education for patients as to what to expect after surgery and how to handle steroid tapering is not terribly well distributed. I since joined the Cushing's Support and Research Foundation and live in Minneapolis. Since Mayo is so close to me, I'd love to connect with more Cushing's patients and see if there is interest that would prompt Mayo to host a Patient Education Day for Cushing's Disease. Any takers out there? You don't even have to be in Minnesota, just would love to have people connect with Cushing's Support and Research Foundation to support other patients going through the tough journey that we have.
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I have been suffering from Cushings for probably 20 years but officially diagnosed February 2025. I had my pituitary Adenoma removed in April. I found out that I have another pituitary tumor now. My cortisol dropped but not below 5. So I am still living like I have Cushings. Exhausted, irritable, and in pain. I would like to very much connect to others. I know of no other person that has this around me. It’s quite a journey.
I live in Kansas but am a patient at Mayo in MN. I was diagnosed w Cushings disease in Dec 2022, had successful pit surgery in 4/2023, and was in remission for 18 mos. I am dealing with recurrence now but clear mri and scans (I.e they can't find the source this time). I'm on Isturisa right now but will likely be having a BLA in late spring/early summer. I would love to connect.
@jayhawkfan Hello! I'm sorry to hear that you are experiencing a recurrence. I had pituitary surgery in 2020 and so far still in remission. I'm curious, do you mind sharing what kind of scans they did to try to find the source? While rare, I think these tumors could appear in other places in the body. I personally would like to dive into what kind of scans could highlight these tumors (PET?) beyond a brain MRI. If you are facing the only option of a BLA, I feel like there might be other options. I will send you a private message with my email and feel free to send a message if you want to chat further. Thanks! Gretchen