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Becky, Volunteer Mentor (@becsbuddy)

CLIPPERS: Looking to connect with others

Autoimmune Diseases | Last Active: Nov 4, 2022 | Replies (75)

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@sweetpeanutbunny

Hi there! Im a 31 yearnold women from europe who recently got told that i most likely have clippers syndrome. Ive had one episode were i was in hospital for a week to get high dose of cortisol. Im still on cortisol but they are gonna try to get me off it as they mean that's the only way to see if the episodes comes back or if im lucky that was one time only… now to my question.. im terrified what will happen once I go down to under 10mg of cortisol and wonder if anyone has gone through the same? What can I expect, same as last or worst? I still struggle to pee for example and had for 5 weeks a catheter and now im using sticks to empty myself several times a day… best regards

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Replies to "Hi there! Im a 31 yearnold women from europe who recently got told that i most..."

Hello @sweetpeanutbunny and welcome to Mayo Clinic Connect. I am so glad you found this group! I, too, have clippers—was diagnosed 4 years ago and undiagnosed for a year before that. Doctors had never heard of it or seen what the MRI showed. I was also given the height doses of steroids and then transferred to a rehabilitation center for a month. I’m better now but still on oral steroids. The doctors put me on Mycophenolate mofitil —a replacement for steroids. It has been a long road for me.
When you come off of the steroids (cortisol), you must come off slowly and be monitored carefully (usually by MRI) to see if the inflammatory lesions return. When mine started coming back, i could feel myself “sliding backwards” and knew i had to get help right away. This time i was given rituximab, a monoclonal antibody. It’s been given to many clippers patients it’s great success. Not for me. The drug quit working after 18 months, so i was put on cyclophosphamide which did the trick. Now I’m on Mycophenolate mofitil and prednisone only. I’ve tapered to 5mg of prednisone and so far so good. I have an MRI next week so we’ll see. I will look for some of the articles that i have on clippers so you can study them. You want to be well educated when you talk to the doctors!
Please take care of yourself and just take it slow.
Did you have a brain biopsy to confirm clippers?