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CLIPPERS: Looking to connect with others

Posted by Becky, Volunteer Mentor @becsbuddy, Nov 14, 2019

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?

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

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vlazorenko | @vlazorenko | Sep 10 12:11pm
In reply to @becsbuddy "@vlazorenko Hi, and welcome to our little group on Mayo Clinic Connect! I’m so glad you..." + (show)
Profile picture for Becky, Volunteer Mentor @becsbuddy

@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

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Becky, as far as I remember, you recently went to HealthCheck. Could you share something about it? I hope everything is going well with you.

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Becky, Volunteer Mentor | @becsbuddy | Sep 10 5:30pm
In reply to @vlazorenko "Becky, as far as I remember, you recently went to HealthCheck. Could you share something about..." + (show)
Profile picture for vlazorenko @vlazorenko

Becky, as far as I remember, you recently went to HealthCheck. Could you share something about it? I hope everything is going well with you.

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@vlazorenko I’m not sure what you are asking. I don’t know what HealthCheck is. I will see my actual doctor next month. I also just had a rituxan infusion which really helps!
But now, you’re the important one here. You need a good doctor, with a treatment plan you will follow . Did you try making any of the phone calls to university hospitals or comprehensive medical centers? You need to do that! You never know what will happen tomorrow!
Please leave a message here to let me know what progress you are making!

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vlazorenko | @vlazorenko | Sep 11 12:22pm
In reply to @becsbuddy "@vlazorenko I’m not sure what you are asking. I don’t know what HealthCheck is. I will..." + (show)
Profile picture for Becky, Volunteer Mentor @becsbuddy

@vlazorenko I’m not sure what you are asking. I don’t know what HealthCheck is. I will see my actual doctor next month. I also just had a rituxan infusion which really helps!
But now, you’re the important one here. You need a good doctor, with a treatment plan you will follow . Did you try making any of the phone calls to university hospitals or comprehensive medical centers? You need to do that! You never know what will happen tomorrow!
Please leave a message here to let me know what progress you are making!

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@becsbuddy to be honest with you, I am currently uninsured. And this is the main reason why I haven’t been looking for a doctor yet. I heard that even with a similar diagnosis, it might be possible to get completely free health insurance, but I still need to confirm this diagnosis in the U.S. I am working hard on this, discussing with my employer the importance of health insurance for me, and it seems we are moving in that direction.

So, thank you very much, but unfortunately, I haven’t yet reached out to medical centers specifically about my issue. I fully agree with you that we never know what might happen tomorrow, but I am trying very carefully to keep all my feelings under control, and I really do have a lot of supplements and vitamins that help me maintain a very good condition.

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robertmayo1 | @robertmayo1 | Sep 21 11:33am
In reply to @jimvosacek "I also had CLIPPERS that almost killed me. I was on pednisone for two years but..." + (show)
Profile picture for jimvosacek @jimvosacek

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

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My doctor recommended Calcium , B12, and Vit D to help me. Its important to stay active on you feet. Walking is good for you. I am on 10mg of prednisone which I think effected my bone weakness and balance. I also do some acupuncture which helps with my balance. Good Luck.

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jimvosacek | @jimvosacek | Sep 21 12:10pm
In reply to @robertmayo1 "My doctor recommended Calcium , B12, and Vit D to help me. Its important to stay..." + (show)
Profile picture for robertmayo1 @robertmayo1

My doctor recommended Calcium , B12, and Vit D to help me. Its important to stay active on you feet. Walking is good for you. I am on 10mg of prednisone which I think effected my bone weakness and balance. I also do some acupuncture which helps with my balance. Good Luck.

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Get off the prednisone as soon as you are able. It causes a lot of damage. It can save your life but get off of it ASAP. I am sure your doctor would agree. I hope your balance gets better. Jim

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Becky, Volunteer Mentor | @becsbuddy | Sep 21 10:33pm
In reply to @vlazorenko "@becsbuddy to be honest with you, I am currently uninsured. And this is the main reason..." + (show)
Profile picture for vlazorenko @vlazorenko

@becsbuddy to be honest with you, I am currently uninsured. And this is the main reason why I haven’t been looking for a doctor yet. I heard that even with a similar diagnosis, it might be possible to get completely free health insurance, but I still need to confirm this diagnosis in the U.S. I am working hard on this, discussing with my employer the importance of health insurance for me, and it seems we are moving in that direction.

So, thank you very much, but unfortunately, I haven’t yet reached out to medical centers specifically about my issue. I fully agree with you that we never know what might happen tomorrow, but I am trying very carefully to keep all my feelings under control, and I really do have a lot of supplements and vitamins that help me maintain a very good condition.

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@vlazorenko how are you and your health doing? Any good progress to report?

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vlazorenko | @vlazorenko | Sep 22 12:24am
In reply to @becsbuddy "@vlazorenko how are you and your health doing? Any good progress to report?" + (show)
Profile picture for Becky, Volunteer Mentor @becsbuddy

@vlazorenko how are you and your health doing? Any good progress to report?

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@becsbuddy Thank you for asking. I’m doing well. On the 27th, it will be two months without prednisone and any other medication therapy. I continue taking only dietary supplements and feel great. I can see how my energy is coming back, and I am becoming more active in life.

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robertmayo1 | @robertmayo1 | Sep 24 11:16am
In reply to @jimvosacek "Get off the prednisone as soon as you are able. It causes a lot of damage...." + (show)
Profile picture for jimvosacek @jimvosacek

Get off the prednisone as soon as you are able. It causes a lot of damage. It can save your life but get off of it ASAP. I am sure your doctor would agree. I hope your balance gets better. Jim

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Yes, I am on 10mg of Prednisone. Eventually working to get off. I have an appointment with Immunologist coming up.

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Becky, Volunteer Mentor | @becsbuddy | Sep 24 10:54pm
In reply to @vlazorenko "@becsbuddy Thank you for asking. I’m doing well. On the 27th, it will be two months..." + (show)
Profile picture for vlazorenko @vlazorenko

@becsbuddy Thank you for asking. I’m doing well. On the 27th, it will be two months without prednisone and any other medication therapy. I continue taking only dietary supplements and feel great. I can see how my energy is coming back, and I am becoming more active in life.

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@vlazorenko That’s just great to hear! Are most of your original symptoms gone?

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