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CLIPPERS: Looking to connect with others
Autoimmune Diseases | Last Active: Sep 25 11:05am | Replies (407)Comment receiving replies
oh, and how are you today? I hope you are doing well, and sorry for my English skills, I`m Ukrainian and I also have CLIPPERS. I was on Medrol (24mg per day) for two years and built a plan for decrease the dosage of steroids, and I`m clear for 3 weeks. But as I see by this thread, I`m not unique in this way and I`m happy ) What are you taking instead ?
Replies to "oh, and how are you today? I hope you are doing well, and sorry for my..."
@vlazorenko Hi, and welcome to our little group on Mayo Clinic Connect! I’m so glad you found us! I’m sorry that you’re dealing with such a disease when your country is dealing with an even bigger problem! I wish you well and safe keeping.
I was diagnosed with CLIPPERS in 2018 and was on steroids until April 2025. Lots of problems came along with tapering but I’m doing OK now. I’m on mycophenolic acid (Myfortic) and rituximab infusions every 6 months.
We’re taking a driving trip on Monday to see how I handle everything . I’ve just really run out of energy. Would rather be sleeping!
So glad you’re here’! Ask any questions and we will try to answer them . Becky
Hello Volodymyr! Welcome. Gosh, only 27, you're so young. You asked what medications people are taking...I get a dose of Ruxience (also called Rituxan) every 6 months. I also get an MRI to check for lesions. I came down with CLIPPERS very suddenly in 2021. I was on megadoses of prednisone for 8 months, then tapered off and have been symptom free ever since. I am now starting to have some side effects from the Ruxience - small skin cancers lesions that we find and surgically remove. Aside from that I'm doing really well.
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I also had CLIPPERS that almost killed me. I was on pednisone for two years but have been off of it for a year. I still have balancing issues and osteoporosis. But my mind still works and I am alive. Balancing may take some time but I am taking minerals
for osteoporosis. Keep positive and have a good neurologist. Good luck. Jim