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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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Hello @terryfriedman ,
I am so sorry you are having to go through this experience. I am with the Cushing's Support and Research Foundation and we have patient support all the time in a variety of ways. You can email myself or Leslie, call us on the phone, attend one of our monthly Zoom support sessions where you are welcome to share or just observe (your video does not need to be on) or depending on where you live there may be other patients we can help you get introduced. Here is the link to our website with the support call signup in the upper left corner http://www.csrf.net
You can also find our contact info on the website on the Contact Us page.
The type of Cushing's you have is exogenous and caused by the external source of corticosteroids. I'm not sure if your physician has talked to you about any medications at all, but either way, we are happy to help you!
Thank you so very much. I’m at a loss. I appreciate your support so much. I would like very much to talk to someone zoom video would be great. I will get in touch very soon. Kindness regards
Terry Friedman
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1 ReactionLeslie my endocrinologist doesn’t believe steroids can cause Cushing so I’m very lost all labs are normal which I’m grateful. But I still believe the uses of steroid causes these symptoms. I’m trying to get an appointment at Mayo Clinic for support. What medications are you familiar with for cushings caused by steroids to eliminate the pain and discomfort . Thank you so much look forward to hearing from you. Kindness regards
What medications do they give Cushing’s syndrome patients caused by steroids I need some help please
Hi @terryfriedman Per our private chat we will continue the communication via email. There isn't a specific medication for exogenous Cushing's. The primary treatment is to find a way to reduce steroids which is what would cause the Cushing's. We will go over multiple questions so we better understand your situation and symptoms to see what we might be able to recommend, although we are not physicians.
PM me too please! I have been on prednisone for 7 months and my weight & “hump” are ballooning, along with other wild symptoms.
Thank You!
Hi Gretchen,
Thank you so much for your time. I have the hump in the back which causes lots of pain and my waist is so thick it’s not comfortable to sit at all. I lie in my recliner. I am not getting steroids ever again..that was my pain relief after my car accident where I had four spinal reconstructive surgeries. Do you know what they can prescribe for pain? Kindness regards Terry Friedman
Sorry to hear you’re going thru this. Can you take something other than prednisone..steroids can cause Cushing syndrome which your symptoms sounds like Cushing syndrome. Keep smiling it does a world of good. Kindness regards
Terry
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1 ReactionYes Gretchen
Thank you your emails are so helpful. The hump in the back is it true it should be surgically removed. I have lots of pain and discomfort