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CLIPPERS: Looking to connect with others

Autoimmune Diseases | Last Active: Dec 7 10:15pm | Replies (323)
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@janegm

Hi Becky,
I had a similar experience with vomiting and gall bladder removal, then an MRI which showed the pattern of Clippers. I’m on Prednisolone and Immunosuppressants at the moment. Have you had success with any treatments? By the way, I live in Sydney and am treated by a fantastic neurologist who has a lot of knowledge about Clippers.
Regards,
Jane

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Replies to "Hi Becky, I had a similar experience with vomiting and gall bladder removal, then an MRI..."
Becky, Volunteer Mentor | @becsbuddy | Nov 15, 2019

@janegm Good morning! Welcome to MayoClinicConnect! We’re an online community of people worldwide who share similar experiences and information and support each other. I’m so glad you found us! I was treated with CellCept and steroids but now I’m on rituxan every six months and I’m tapering off the steroids. They really helped but I developed bad osteoporosis. Have you been able to resume your normal life? What has changed for you?

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liztbnr | @liztbnr | Sep 28, 2022

My medical professional knows practically nothing about CLIPPERS. Neither did the neuro at Scottsdale Mayo. So, I have been on pred for twelve years. Nine mg and seeing how low I can reduce the dosage. Cell Cept was a disaster for me, bad reaction. I was diagnosed initially by Jacksonville Mayo, but moved to Tucson ten years ago, fully hopeful I could eventually get away from pred. No such luck. This is a mystery disease that gps don't want to deal with. I'm fat and tired. I have tried on my own to track someone down who treats CLIPPERS, but no luck so far. liz

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