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CLIPPERS: Looking to connect with others
Have you ever been told that you have Clippers disease and you’re thinking: “ what? I’ve never heard of such a thing! What on earth”? Well Clippers is real and is one of the newer Autoimmune Diseases—it was only given a name in 2010. It’s similar to many other AD I’ve read about on Connect: vague, random symptoms that can be debilitating and difficult to diagnose. An MRI and brain biopsy are needed to confirm diagnosis.
My journey with Clippers (Chronic Lymphocytic Inflammation with Pontine Perivascular Enhancement Responsive to Steroids) began with unexplainable vomiting. After many trips to the ER and being shrugged off be doctors, someone decided that it must be a gallbladder problem, so it was taken out, but nothing changed. The vomiting got worse and, eventually, I couldn’t walk without help, I choked on foods and water, my voice changed, and I lost 20 pounds. I was finally taken seriously by doctors when husband again took me to the ER and I was basically unresponsive. I was admitted and given an MRI (which I had repeatedly begged for) and the scan showed a large area of demyelination of my brain. None of the doctors knew what was going on, but the neurologist finally decided on intravenous steroids and a brain biopsy. I have no memory of that hospitalization. When I got to rehab, my husband took me to University of Colorado medical center where I continue to get treatment in their neurology-immunology department.
My message is to encourage anyone, with unexplainable symptoms, to tell the doctors to “think outside the box” and to advocate for themselves. Have someone go with you to appointments and to take notes! Don’t keep information only in your head!
Anyone else out there?
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Gracias, igualmente.
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1 ReactionSending positive and healing thoughts your way. ❤️
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2 Reactionsoh, 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 ?
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2 ReactionsHello everyone, I can’t say I’m happy about the events in life that brought me here, but I’m definitely glad that I’m not alone. Let’s get to know each other 🙂 My name is Volodymyr, I’m 27 and I’m Ukrainian. I was diagnosed in May 2023, but the symptoms — diplopia, impaired coordination, and ataxia — appeared back in January. I was on corticosteroids for two years, but a little over six months ago I realized I couldn’t continue like that, so I created a plan to taper off the therapy with maximum adrenal support. I wanted to share this and very accidentally found your cozy little corner. I’d love to hear from you: how long have you been living with this condition, and what therapy are you currently on?
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1 ReactionI 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
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3 ReactionsGood luck, Jim, you`re strong, and remember that we - humans saw the biggest challenges in history and we won.
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2 Reactions@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
Hi Becky, thank you for start this thread, and good luck in your trip !) please keep inform about your progress)
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1 ReactionHello 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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3 ReactionsI too am a miltary vet and I feel for you. I did planned for my old age and MEDICARE did take care of my clippers. As I am also a resident of Luxembourg (one of the riches county on the planet) I will choice the USA 100%. My statement was to convey that do not worry about me as I am fine, that might not be the case for everyone. I hope things turn out okay for you.
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2 Reactions