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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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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?

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Replies to "Hello @sweetpeanutbunny and welcome to Mayo Clinic Connect. I am so glad you found this group!..."

@sweetpeanutbunny I found this article that talks about clippers and rituximab.
The other articles were more serious intellectual articles, but i can post them if you wish. Becky

They are taking me off the cortisol slowly and I have a good doctor that does her follow up with me and there's an MRI booked for March. I'm coming down to 10mg prednisone then 24 of Jan and will see my doctor around that time as well. I feel safe and well looked after so thats all good but im as you can guess and understand concerned as to what could happen when the dose is lowered. So far they haven't done or even mentioned a brain biopsy but in the papers from the MRI second one that I did recently it states that they firmly believe it to be Clippers so not sure if brain biopsy is something they will consider if it comes back? On my second MRI done 16th december everything seems to be fine again, doctor said that everything gone back. Is that normal for Clippers?

Thanks for the articles, ive read some online but always good to read more! Also thank you for replying to me and giving me your story and advice. Best regards